20 Things You Can Expect After Brain Surgery

Posted on
Aug 28, 2013


Today, a friend of mine is having surgery to remove a brain tumor. We talked about it a little bit last year, not long after my surgery. His doctors were able to confirm right away that his tumor wasn’t cancerous (which is all kinds of YES), but in the last few months, it started growing at a rather unpleasant rate, so they elected to pull that sucker out. 

I meant to write this post a while ago for him, about what he could expect after his surgery. But instead I’m writing it right now, which means that he’s going to read it after his surgery, and really, what good is that going to do him?

“Here’s what you can expect … from the experience that you are going through right now!”

Oh, well. Better late than never. And who knows … maybe some other fool with a hole in their head can benefit from my “wisdom.” (Oh, and if you want to read all about my brain surgery, the posts are here!)


Hey Dingus!

(Do you see how I am being affectionately mean to you? That’s just my way of letting you know that everything will be okay. I could have opened with a “Hello, My Dear Friend” or some b.s. like that, at which point you’d know that you were in some deep shit. But you aren’t. Your brain is going to be just fine. Not sure the same can be said of your haircut. ZING!)

If you are reading this, congratulations! You’ve pulled yourself together enough to get on the internet. That alone is a pretty huge step; it took me nearly a week before I could find my computer, and then another week before I could actually write something coherent (if you can call what I write coherent, that is). I’d start composing an email or a post, and then forget was I was talking about after half a sentence.

HELLO? Are you still awake? It’s cool if you dozed off. That happened to me a lot.

Anywho, I figured I’d share with you some of the things I noticed after I had brain surgery – things that struck me as weird or unusual. I spent a lot of time online trying to see if my experience was normal. I found that there wasn’t a lot of information out there, so I don’t really know.

You might relate to a lot of this stuff. Or you might think that I’m off my nugget. Either way, I wrote this post for you, dorkface, and I hope that you feel better very, very soon.

Here’s what you expect after brain surgery (according to me, at least):

  1. It takes a long time to recover. I know that probably sounds obvious, but this point took a long time to sink in. I got really impatient with myself. I kept wondering, after just a week, when I’d start to feel like myself again. At two weeks, I started to panic. In the end, it took months – months! – before I felt normal. It’s been more than a year now, and guess what? Things still aren’t exactly where they should be. And that’s okay. Healing takes time. Be patient with yourself.
  2. You will be stoned out of your gourd. I was loopy from the medicine, and slept for days. DAYS. I could barely stay conscious for more than  a few hours, but I kept fighting it, which was dumb. Just sleep it off. You’ve earned your rest.
  3. You will have the attention span of a goldfish (because of the aforementioned medicine). TV shows will be really difficult to follow, and reading books or email will be absolutely impossible. Even the plots of movies you’ve already seen will be absurdly confusing. Have you tried watching Adventure Time? The episodes are only 11 minutes long, and they don’t really make sense anyway, so you might want to check them out.
  4. It might hurt. A lot. This should probably fall right into the “obvious” pile, but I did not anticipate this. The thing is, getting your head drilled actually causes pain. People will tell you that the brain doesn’t have any nerve endings, but your scalp and your skin do. Now is not the time to wait it out or to be tough. Because you could end up with a headache that lasts for – I kid you not – days. Take your damn painkillers. You can be macho at a more appropriate time, like at the grocery store or your child’s birthday party. (Also, if you start feeling really badly, or if cerebral fluid starts leaking out your nose or ears, call your doctor IMMEDIATELY).
  5. Nerves take a long time to regrow. When your surgeon cut into your skull, they also cut into a lot of tissue and nerve. Over the next few months, as these grow and heal, they’re going to be crazy sensitive. Every time I shivered, it felt like it reverberated straight across my skull and down into my brain. I’ve found that the best way to calm things down was to gently press a hand onto my head. Just a bit of pressure helped soothe my nerve endings. Also, consider wearing hats to ward away chills.
  6. Your senses might reset. Rand told me about this, and it still amazes me: whenever the brain is touched or traumatized, your senses are affected. In my case, I noticed that my already strong sense of smell (this nose ain’t for show, buddy) was now basically super-human. I could smell things that hadn’t happened yet. I also became acutely aware of the sound of my own voice, which sounded strange and foreign to me. Sometimes it still does. Things normalize after a few months, and I’ve got to admit: this is one of the cooler after-effects of brain surgery.
  7. You ain’t gonna poop for like, a week. The lower intestine is the last thing to wake up after major surgery. So take all those stool softeners the docs are giving you, okay?
  8. Steroids can you turn into a hormonal, rage-filled beast. The good news: they stop your brain from swelling, so you don’t die. The bad news: they transform you into the Hulk. But with acne. And a huge desire to eat everything in your fridge. Here’s a tip: try eating lots of lean protein and veggies, and accept that you might gain some weight, anyway. Be responsible, but don’t try to limit your caloric intake or diet (I can’t remember why – but I think it actually has a negative effect on muscle mass). Remember: it’s not permanent. You’re feeling weird because of the medicine, not because you’ve become Phinneas Gage or something.
  9. Scar tissue is a bitch. Check with your doctor on this one, but after you’ve healed completely, consider massaging the site of your incision to help break up the scar tissue that forms around it (I think that you, like me, will have a hole in your skull as opposed to a metal plate. So, please, be gentle). A little bit of scar tissue protects your skull, but if you have a lot (like I have) you might feel an uncomfortable pulling across your scalp. Do be careful: even now, a year later, I get headaches if massage my suture spot too much.
  10. Your head is going to look like a medieval dungeon. There’s the matted blood in your hair, and the weird jelly they put on your head, and the metal staples holding it all together and … ugh. Oh, and you’ll have weird scabs on your scalp, as well as some bruising. As gnarly as all that sounds, it is, apparently, normal.
  11. Obviously, this goes without saying, but you shouldn’t pick at anything.
  12. Your throat is gonna hurt like hell from the breathing tube.
  13. You are going to wake up crazy thirsty from the anesthesia, and no one is going to give you water, because they are concerned you are going to throw it up. So instead, you get to much on ice chips in an attempt to quench your crazy thirst. And then you will probably throw up anyway.
  14. Do you speak more than one language? I’m pretty sure you speak French. Anyway, you might get confused as to which language you are speaking, and to whom. I did that – kept talking to Rand in Italian, and getting mad when he said, “Baby, I can’t understand you.”
  15. Get someone to do your laundry. It’s amazing how quickly you will go through every single pair of pjs you have when you are wearing them non-stop. Ditto for pillowcases, which you will need to change nightly. And towels. You will basically amass a military barracks’ worth of soiled clothing and linens, but you will be too out of it to remember how to work your washing machine. Ask someone for help.
  16. Actually, for that matter, get someone to take care of you. Swallow your pride, and rely on other people. You will be in a daze. Making yourself food, getting dressed, washing your hair, are all going to be impossible without help. I was 31 when I had brain surgery. I can’t remember ever needing my mother more.
  17. People in your life are going to react to this in different ways. The crazy thing is, you won’t be able to predict who’s going to do what. Some of them are going to be amazing. They will come to the hospital and visit you and send you chocolate-covered fruit and call you to see how you are doing. They will stop by your house with food and presents and if they are grossed out by your head, they won’t show it. And some folks … well, some of them will drop off the face of the planet. They’ll say or do weird and insensitive things. They’ll dismiss what you’ve been through. It may hurt your feelings, it may be infuriating, it might just confuse the hell out of you. Whatever the case, try to go easy on them, okay? Some people are just bad in a crisis. Besides, you’ve got bigger things to worry about.
  18. Friends are going to look to you for cues on how to act. If you don’t want to talk about it, they won’t ask. If you are really open, they’ll be receptive to what you have to say. Decide how you want to deal with this thing, and you’ll find that everyone else will likely fall into step.
  19. The entire experience will be weird and surreal. My surgery was more than a year ago, and I still haven’t completely wrapped my head (heh) around what happened. Things seem to fall into two categories: “before my brain surgery” and “after.” That’s just how it is. It’s a weird thing.
  20. For a very brief window of time, everything in your life is going to make sense. The petty things that bug you will fall away, and you’ll just be really grateful to be alive. Enjoy that feeling for as long as you can.

That’s about all I have for right now (if more things come up, I’ll add them). In the meantime, I hope you are feeling better, buddy. And welcome to the club.

Leave a Comment

  • I’ve read virtually every single one of your posts going back through your archives. I caught your blog and started following almost literally a year ago to the week with your tumor post. And now it’s come full cicle. This is probably my favorite post you’ve ever written to date. I keep thinking about what friends would I have that would stand by me like you mentioned as I have no family. Anyhoo, thank you for the fantastic read.

    • ss5321

      How are you now?
      Keep up the good laughs and humor. Life is full of surprises.

  • Sha

    well there you go again … laughter and tears

    only you and Forrest Gump can do that to me every time.


  • Bravo. Give me a heart attack any time (mine was 5 years ago now) over the demon cancer. What I appreciated most were the people like yourself who had been through the process and offered such sage advice from personal experience. I hope your mate gets to read it. Keep us posted.

    • Everywhereist

      He’s doing wonderfully. Awake and facebooking like a champ.

      • skye

        After my brain surgery, I went back to school and studied nutrition. I hope everyone Google’s articles to learn how berries can stop and even reverse tumors! Here’s a link to one article. But specifically, there’s a lot of online research that shows raspberries are excellent tumor fighters. And, they’re yummy!

        • Fobos

          I’ve had an brain tumor surgery in july 2014. And the doctors said that prefer not to eat any with vitamins neither antioxidants. ¿ What are your thoughts about it? (They told me that vitamins or antioxidants can feed a tumor)


          • Everywhereist

            I’ve never heard anything of the sort. That’s really interesting, though. But I’m not really sure how someone can survive without consuming vitamins.

  • Susan P

    I had brain surgery 3 weeks ago today… Thank you for all of the smiles and laughs I’ve had since finding your blog a couple days ago, as I googled something on brain surgery and headaches. Finding your blog has been my favorite part of recovery!! I also had a benign brain tumor…the whole thing has been surreal, but life moves on!! Thx to you for helping me find my sense of humor again after those steroids tried to rob me of it!

    • Everywhereist

      So glad it was benign – and so happy that you are enjoying the blog!

      • ss5321

        Glad that you are better! My sister has surgery for cerebral artery aneurysm in India (SGPGI). She is in recovery ICU but not responding. Drs. say give her 14 to 15 days because it was a big surgery. I feel 14-15 days are too long. You are writing the blog within 3 weeks!

        • Everywhereist

          Keep in mind that everyone is different, and our surgeries are all different. It sounds like your sister’s was quite intense, and quite different from mine. I’m sending wishes for her speedy recovery.

          • amanda

            I had my first brain surgery in 2007, I had a colloid
            Cyst blocking the third ventricle, which allows the spinal fluid to flow properly. Anyways they put in a vp shunt, it kept getting clogged with
            Brain matter,so here it is 2015 and my last surgery was in 2010.I have excruciating headaches, and did not get a metal plate, just have that scar tissue. Iseem be clumsy lol I forget allot.
            I am in more pain now than before, but I was curious, I bet down and when I came up I caught the end of the stairs tail right in that open area. Will this cause any effects to worry about, bc I am having mild dizziness, and major head pain again grr

  • wow. Geraldine, you have an amazing gift.

  • every single post that i have read from you, i have smiled, laughed, snorted and snickered. that is really something to be proud of. i love reading your blog and have been following you for years. i liked this post very much and i remembered how sad i felt when i read about your brain tumor (has it been a year already!!!) and i am glad you are well.

    have a good seattle weekend. 🙂 love from singapore.

  • Thorough list! I would add to that: Your mouth will be extremely dry post surgery (as opposed to feeling thirsty). Use (and enjoy!) those little sponges on sticks that you dip into water. Those things brought me more joy in the hospital than anything else. Also, you will be amazed by how many meds you have to take post-surgery. Have someone create a schedule (I enjoyed mine in spreadsheet format, because I heart Excel) and set your phone to go off every 4 hours to remind you to take those pills. Also, don’t take your meds with a beverage you enjoy. I can no longer drink XXX Vitamin Water. Eck. Follow-up MRIs are very stressful, probably the most stressful days of your year, but each one gets easier. But most of all, as Geraldine mentioned, know that it takes a long time to recover. Your “normal” will be different, and that’s okay. Even brain functionality that may have been thought to be lost can come back months and months later. I regained (most of) my lost sense of direction over a year after surgery, and I was soooo excited! Welcome, guy, to the very VIP club!! 🙂

  • .. you’re awesome… I want a friend like you!

  • Christine

    You are awesome, as we who read your blog know. BTW your advice works pretty well for knee replacement surgery too. Though it is definitely not as scary as brain surgery, it does seem to have a lot of the same issues during recovery.

    All the best to your friend. And to you and Rand too!

  • I just had a brain tumor removed 5 weeks ago (an acoustic neuroma–a 5cm one at that!) and I cannot agree with you more about this list! You have such a hilarious way of putting things, I love it. You remind me a lot of myself ;). Keeping a positive attitude is half the battle, right?! Thanks for the laugh; I definitely needed it today!

    • skye

      Hi Kelly,

      I too had AN surgery 1.5 years ago. Brain surgery is scary stuff, but I now feel like a bad ass who can do anything!

      • Willa

        Had brain surgery 6 months ago….one aneurysm coiled…one clipped. I too feel like there is nothing i cannot do! Pretty bad ass feeling! Isnt it? We are all survivors. I too googled information on these surgeries and found this blog to be very accurate, and helpful. Cool to relate to people that have dealt with the same medical issues. God Bless all!!!

        • debra

          My 40 year old female friend had a dermoid tumor removed from the front of her brainstem February 3, 2014. She is still paralyzed on her right side, she cannot speak, she had a traciotomy because cannot breath on her own and a feeding tube. She is able to breath on her own for 8 hours a day now so thats positive..she is aware of whats going on and you can read her lips to find out what she needs but no noise out of her mouth. She is still in hospital. The tumor wasnt cancer s8 thats a blessing…im so worried about her recovering. Its breaking my heart that her young children havent been able to even talk to their mom in 3 weeks. I was hoping someone could give me any information or experience they have on this…I need peace im so afraid….thank you…..sa tx

        • Doug

          I am 1.5 years out and still can’t believe I went through that. I have to feel my scar to remember what I went through

        • Siyasanda

          My mother will be under going a brain surgery next week and I’m crazy scared. But after reading this post, I am abit more calm. Thank you so much! I also now know how to help her after her surgery and understand a little what she will be going through.. I’ll be sure to read this post to her everyday so she too knows how to deal with it all!

    • Karen Smith

      I too just had AN surgery and have loss some of my movement and hearing , would like so talk to some of you . Thanks Karen

      • Vicki

        Hi Karen ,
        I had a gbm type 4 tumor removed 2 years ago. After the surgery my right side did not work at all! Slowly, very slowly it is coming back. I also could not hear anything in my left ear. Many different Drs did different tests and they couldn’t find anything wrong. I know there is something wrong and still is. I just work hard everyday on exercises and eating as healthy as I can. My right side still has loads of problems, I drag the foot and have a hard time standing on the right leg, and balance is very bad if I’m in a tight space. But I am grateful for everyday I am alive and have a wonderful new outlook on life. I will be walking in my second 5k race this weekend. I will be the last over the finish line, but I don’t care. What I am overcoming makes me proud, even though the Drs don’t acknowledge the problems.
        Until someone goes through brain surgery I don’t think they can understand. I’ve stopped feeling like I’m crazy saying I am having problems when the Drs said nothing appears wrong. They don’t know everything and are just doing the best they can with their limited knowledge. Be grateful you are alive now, because if this happened 50 years ago, they probably couldn’t have helped you. Get to learn your new body and push it everyday.

        • Dear Vicki, thanks for sharing your post.

          My dad had a brain surgery 3 weeks ago, GBM grade 4. His left body’s power is 0 still. But he is able to sit up with my family’s help. It is a mess at home now and we hardly know how to handle this situation.

          His emotion is getting negative, very low appetite in eating and drinking, can’t sleep at night. And will be making the same request to go to toilet every 5-10 minutes, from morning til night.

          Mom and sis cannot take it even just for the first night after he’s discharged from the hospital. They are now in the midst of checking for nursing home to send him over… 🙁

  • Uh oh, Sara. You lost your sense of direction? I would be doomed since I can’t imagine a worse sense of direction than I have without having had brain surgery. Geraldine, like Mike above, I also stumbled across your blog right around the time of your brain surgery. (I think it might have been the fact that you named your tumor “Steve”. My husband’s name is Steve). I am going to send the link for this post to my brother-in-law to take to his brain aneurysm support group since they are all survivors of brain surgery. I think it will be helpful to people who are dealing with their “new normal”.

  • I am amazed at how positively to have put this down. I totally adore you for your attitude!
    Kudos to your champ friend too 🙂

  • I second the Adventure Time recommendation! I watched it when I was recovering from surgery, all doped up on heavy pain meds. It’s perfect when you can only stay awake for 15 minutes at a time!

  • Belinda

    My son directed me to this post; my BS was 8/22/13 (right frontal, benign). It was so refreshing to read through your list and see what I have to look forward to. I was curious how long before you could start driving? I love your analogy of the Goldfish attention span – that’s dead on. I’ve got a notepad on my kitchen counter and I’m jotting thoughts down before I lose them – sometimes I catch them, sometimes I don’t. And Sara, thanks for your input as well. I’m NOT looking forward to those ghastly MRIs – you’d think that in this day and modern age they would have figured out a way to make them less uncomfortable; good to know that they get less stressful and easier.
    Thank you for this site! I look forward to much more perusal of your thoughts.

    • Ann

      I had a front lobal right benign tumour removed in January this year.
      Very scary and I’m on my own.
      I get very tired and my head feels tight …
      I was misdiagnosed by my GP and consultant from local hospital with a urine infection and depression. Then 3 and a half years later had a seizure.
      I’m off the steroids and on keppra. Now down to 1000mg a day.
      Still very tired and get good and bad days.
      My consultant at the national neurology hospital said I will have another MRI scan in December. So no other follow ups apart from seeing a new urologist for my urine infection that I still have.
      How did you know you had a tumour…

      • Moses

        It’s been great to read everyone’s posts. The 20 things to expect after surgery are stuff only we know about and we seem sometimes to a slightly warped sense of humour after the experience. As I said to my friend “I needed this like a hole in the head”! I had a 3cm meningioma on the front right side of my head removed a few weeks ago.. At first i thought they the doctors were joking. I had terrible headaches and blurred vision and periods of feeling depressed for a few months. Sinus trouble I thought. Nothing seemed to shift it. Post surgery I’m doing well and up and about.. Not cleared to drive yet. There’s a six month minimum waiting period.! I find sleeping the most difficult part I find myself lying in bed at 3 in the morning with no prospect of falling asleep again. How come i got sooo many spots and still have them.? I think that now it’s all over just how serious it was and is. I am certain of nothing now as my health has always been really good. My confidence has been shaken for sure. It’s been a really bizarre experience. I got the all clear last week it is benign and is a grade 2. It was removed completely. I am due for another MRI in December and, please god if I don’t have any seizures can go back to work in the new year, It has been so good to read the comments and the positivity from people who have more difficult circumstances to deal with.. I got out of this with a numb head and a short haircut and know how lucky I have been and am.Take care everyone.

        • Your comments are encouraging. However, I need some real answers such as a) how long were you in the hospital b) what type of rehabilitate (ie physical therapy, some other type or both “) how long before you were independent again? I’m single with epelipsy. My doctor is pushing surgery, even though I’ve been seizure free for six months on medication. From the posts it seems like everyone was back in action almost immediately. That’s hard to believe. Help! This is a HUGE decision.

          • Lynne

            My best advice is to use Dr. Judy at Jefferson University in Philadelphia.
            He did my brother’s surgery Sept. 28th, 2014 — and he was released to come home as long as someone would be with him 24/7 on Oct. 1st, 2014. The surgery was precise and they woke him up during it to make sure that they didn’t affect his speech and sensory areas… he is one lucky guy having found that surgeon and my family is grateful to him. The only therapy he needed was speech therapy. The communication techniques for getting his point across on words that he had trouble recalling was helpful and the words have been coming back on their own, he is doing very well. The challenges are being tired, thinking you can do more activity too soon, taking meds you don’t want to, and not driving until they say you can…pressure in the surgery area if you get upset so stay calm, realizing that you have a lot more time to be alive and coming to understand that being patient (patience) is a gift to yourself as your body can heal itself, it just needs sometime. Each person has a different experience and recovery time.

          • Frenchfries

            Did you come to a decision yet? I had surgery almost three years ago, but don’t want to give my experience input if you have already decided.

  • jaydek

    I have followed you for a year now all over the world and through personal trials, but this was the first time I felt compelled to submit a comment. I was in a car accident this year and suffered a mild traumatic brain injury that has changed my life and left me looking for answers and peace. Your post spoke to me in a real way and I want to share it with my family since you so eloquently and light-heartedly put in to words all the issues I’ve gone through. Thank you for giving voice to the things that I cannot.

    I hope your friend recovers and that you continue to be well, too!

  • Catherine

    Spot on.

    I just had my 10th anniversary. My dog and I celebrated by going trekking in Nepal. Never thought I’d be able to do that again.

    I still can’t get my head around it, it’s so, surreal. It took me a year before I could be independent. I kept forgetting I had something on the stove, blew up a few microwaves, that sort of thing. I’d suddenly realize I was in a store and forgot why I was there or how I got there. Would walk home, leaving the car, which I wasn’t supposed to drive, in the parking lot. The scar was very helpful during this period, people were very patient and helpful

    The hardest thing is people don’t understand, even people who try really hard to understand, can’t. I seem normal on the outside and function very well, but I still have trouble and people can lose patience with me. I’ve improved quite a bit and still continue to improve, as I learn not to fight certain things and adjust.

    I think the reason it was so debilitating for me is I had a grand mal seizure and stopped breathing, don’t know for how long. It took them over a half an hour to control the seizure. That’s how they found the tumor. Hard to say what was tumor and what was seizure/oxygen deprivation.

    When I ran out of friends, it was a lot of work and much more stressful and confusing for them than they could handle, I made a radical decision. I took my dog and we hopped on a plane and headed for India. I needed someplace to heal, that was affordable and I could pay someone to help me. I practiced yoga six days a week and ate an organic vegetarian diet. My recovery accelerated. It was like magic that required a lot of dedication and commitment.

    My doctors told me I’d never be able to live on my own or work. I tested out as highly functioning retarded. I was determined to prove them wrong and I did. I can’t work more than part time and had to change careers but I have an amazing job, my dream job. Even BT (before tumor, that’s how I look at the past) it would have been my dream job.

    Bottom line, it was hard, lonely, scary at times but despite that I’m glad it happened. I am a much better person for it and it lead me down a path to a happier existence. Plus it’s a great story to drop at a cocktail party. 🙂

    My advice is to people recovering from brain surgery, if you don’t have pets try to find a way to be around your friends’ pets. My dog and cat provided me with companionship and unconditional love. Taking care of them got me out of my head and it felt very rewarding to be able to care for them.

    Best of luck, thanks for posting this. I wish you the very best.

    • Cathy

      I had surgery 3 years ago and have problems with my memory. I lost a lot of friends since then. I don’t know if it’s because I forgot to call them or if they don’t want to be bothered with me. Now I think the two people that I associate with we’re taking advantage of me and my cat was sick all the time so I gave hm away. I signed up for senior club at the community center and hope that will stop me from being lonely next year.

      • Cherie Taylor

        My tumor was removed two years ago~ Im having all types of problems ~ I no longer have insurance and can’t even have my follow up MRI now a year past due. My tumor my atypical menginoma and Im not certain if my severe depression etc is a sign of a new tumor or if I just need medication as Id taken in the past!! Praying for help!! Feel so alone~ yet nice to connect with others with brain tumors~ thanks for your post!!!


        • Mary

          Hello Cherie Taylor,
          what a beautiful name, it is my middle child’s name just vice verse ( Taylor Cherie). I too had a Menginoma Brain tumor but it was in Dec. 2008 and had it removed on the 12th. I remember in October at work feeling so bad with this terrible headache that just would not go away, I just could not deal with it any longer so I had to make a doc appt. and they told me to come in. I was told I had an upper respiratory infection and a sinus infection, so they gave me this 7 day dose pak to take. It worked and I was like my problem was gone. Until I completed it, then the pain came back worse than before. I had to go back so he was like I am going to send you to an ENT, ( at this time I had this buzzing sound in my ear that would not go away). I went the next day and they found out I had hearing loss in my left ear so for some reason they wanted to send me to get an MRI of my brain to check things out to make sure all is well. I didn’t think nothing of that, just thought maybe this is a serious sinus infection.
          Well did the MRI, A day later the ENT office called around 3:30 pm and asked could I come into the office for my results.. I was like ” I can not just get off work like that and I already took my lunch for today and I get off in an hour” they said we close at 5 and the doctor said they would stay until you get here. ” I was like what is going on with those results”

          I went in the room and the nurse said the doctor will be in shortly, so he came in and said Mrs. Brown we got your MRI results back and it shows that you have a 5cm Mengioma Brain tumor, we are sure it is benign and I have a surgeon who is very great who is capable in handling these type of cases. ” I am sitting on that table looking stupid!!! like what you just said? who me? I had a sinus infection and a head ache and now it is a brain tumor?” I can refer you to a great Surgeon you can talk too.
          I was like okay.. I was so shocked I called my husband on the way home and told him but I could not tell my kids at that time, but we made appt. and went to the doctor appt. When I tell you this doctor was blunt and straight forward.. He was like it is pressing on the outside of your brain, it is a slow growth tumor, it has been there for years, and it could stay there and it could continue to grow slow still but I can not say. Now I can remove it now or I can wait.. it is up too you. He explains how he would do the surgery and we schedule the date and he asked if I had any question, I said yes’ my question was ” WOULD YOU HAVE TO SHAVE ALL MY HAIR OFF?” He was like Mrs. Brown, I wouldn’t think that would be the question you would be asking me, I figure it would be how many people died on the operation table, I told him, I wasn’t worried about that, I know that God was going to take care of me during that time, I was worried about my hair. He said I would save your hair and said he would cut like a bang.
          But after the RAIN is over (Surgery and Recovery) oh boy!!! I have not been the same and I am not the same, I am like you depressed, I have anxiety, I am more nervous that ever, I can not sleep, I go to bed around 3am and get up some times at 7am or 8am every morning. I take medication for headaches, depression, anxiety, leg pain, I wear bifocals, I have headaches every morning, my head hurts so bad ( the crown of my head certain times), my incision hurts, my speech is off, my balance is off, I can not focus nor concentrate.. I too feel like I am alone and I have not one to talk too. I wish I had a support group or at least someone to talk too who has been through or feel the same way I am feeling. I have been to physiologist after psychologist but I need someone who can tell me about how to deal with the after affect of this brain tumor.
          I had a job for 19 years and 4 months and got laid off, I was settle and felt I was going to retire there because I knew what I was doing, but then I was RIF, so that mean I would have to apply for something else and then I would have to take a test to do so, well I could not passed the test, I could not focus when I got in there, I could not concentrate. I even went back to my doctor to get a letter for special accommodations but I still could not pass. I don’t have any income and don’t have a job..
          I know this is the longest comment ever but I needed to vent.. I am sorry!!

          • Dear Mary,

            Thanks for this long sharing. I read and understand more now for my dad. He had his brain tumor removed 3 weeks ago and was discharged on Wednesday. And he is acting so not himself ever since he got back home, and making my family frustrated by his actions.

            God’s healing power be on you.

            Evelyn Zoé

          • I had surgery on August 6th 2014 everyone who sees me say that i look great and it doesn’t look like i even had brain surgery, not only did i have brain surgery the doctor had to shave my face bone because the the tumor had been there so long, i thank God everyday for another day with my husband who’s been by my sid every step of the way, and my children, i have some good days but more bad days, i get depressed and i cry often and whish i to had someone to talk to who understands what im going through. My sister tells me oh workout it will feel better is she serious, i already feel like im going to pass out i know she means well she doesn’t understand, the days i feel good i take advantage , the days i feel bad i try and rest, i so hope you have more good than bad days, and everyon who reads and writes on this blog you are in my prayers if its for you orva love one.

        • PhilByrd

          Hello – I’m here just looking at all the blogs & it strikes me how they all sound the same…..there where signs but no one could pin point it. I had a mri in 08 & they said nothing was there & then life went on & I still kept telling my dr that something was wrong……I told my husband I thought it was stress but on 3/14/2013 I had a seizure at work they found the meningioma the size of a golf ball & it contained type 2 cancer……my life was turned upside down. I turned directly to the lord & stayed positive……now pushing forward I recovered went back to work 12/2/13 the meds were tapered off & today I’m sitting here recovering from another seizure I had on 5/21/14 due to a fluid build up from the radiation. I continue to remain positive & You do the same. Don’t give up & if you don’t feel right go to ER with neuro they can’t turn you away. Good luck & God Bless…..vent any time you like!

    • Chitra


      I had a brain surgery for the removal of a benign meningioma in Dec. 2012.
      I am so incredulous that you have made such a remarkable turn around following your surgery.
      I too have the same term BT for the period before the surgery. MY personality has changed from a gregarious,people loving person to a reclusive who is fearful of meeting people!
      I used to conduct Yoga classes for 15 years in the US; now I wonder how I did it!
      I was a substitute teacher; now I am fearful of going to the schools and facing the unknown lesson plans and kids.
      Any idea of how I can overcome all this and go back to my BT personality.

  • My husband is having a huge cancerous tumor removed on Thursday and I’m going to have him read this post right now. His tumor is the size of a brick but thankfully it’s not in his brain, it’s in his gluteus maximus muscle… and yes, he has made many, many jokes about the mass in his ass. Thanks for writing this post, your humor and outlook is always so fun to read!

  • Chris

    Your funny-but-true post is a great way to help those of us getting ready for the post-op process to know what we’re in for. Knowing is much better than not knowing, and for the few people I know who will stick with me through this thing- a great primer. Thanks!

  • Hagar

    Wow, I think all the comments are as moving as post itself. All the best to you and your friend.

    Love from Amsterdam

    • I had my brain surgery two weeks ago and am trying to figure out what is next? I have a very positive attitude but continue to be discouraged. I love food and nothing tastes the same. I feel drunk all the time but I just want to wake up sober. I have been exercising and going through my daily routine holding on to things for balance. My surgin said I would be able to return to work in a week or so, Not. I have three dogs that seem to know what is going on and have been great. I have good days and bad days but everyday blogs like this give me strength to try, and keep putting one foot I’m front of the other. Thanks of all of you for sharing your experiences which helps me see I am not ever alone going through the changes from brain surgery. I will learn and adapt as many of you have and my normal may never be the same but it will be mine. Thank you

  • Meg

    Thank you so much for sharing your experience. This will help Me and my son deal with what is facing my husband.

  • I had forgotten about your brain surgery. Having a rotten memory is one of my issues post radiation treatments for my brain tumor. It sounds like I got off easy since I was lucky enough to find a doc that thought he could treat me without surgery. I’m now two years out (or is that three years, cant remember) and my tumor has stopped growing. Best wishes to you and your friend as he recovers.

  • What a wonderful thing to give your friend. I hope it all went well for him. This was funny and poignant and direct and despite all that a tear fell from my eye. You’re a legend.

  • Eileen

    Had grand mal seizure 8/1/13-ambulance ride & lots of tests & scans…outcome: 3 cm meningioma. Surgery to remove it. 8/19/13. Benign !! Thank God! Still.a small portion behind right optic nerve, Off steroids now but the Keppra makes me extremely tired & can’ sleep at night. Anyone else have issues with Keppra?

    Finally’, Dr. Eric Nussbaum is my hero !!!

    • Debbie w

      Hi, i had a golf ball sized meningoma removed 16 aug 2013. It was picked up because of am optician referal – by the time a specialist looked at me 8 weeks later the bulging eye nerve endings had developed into a bleed behind my eye. I wonder – was i close to the grand mal seizure you talk about??? Scary. I sadly have no results although it has been 7 weeks – they do not want to commit to it being benign. Grade 2 maybe? Your op was a long time after your seizure, eileen!

      • Eileen

        Hello Debbie – Just by “chance” read your post tonight. The long duration for me was because they wanted to get brain swelling down w/srerroids – blood sugar was up over 700! That had to be dealt with, too and this all took time. My right eye bothers me sometimes especially if I have tears during something emotional on Tv – it stings very badly! i am going to address that at my next appt. i hate keppra ~ some refer to it as: KEPP-RAGE ! No glasses needed b/4 surgery – now need “cheaters” to read newspaper. I hope everything works out for you & you get an honest & direct answer.

        We are now members of a club we never wanted to join. But it is comforting to know we are not alone and we can actually relate to all this. I’m from MN, by the way. It was nice to hear from you.

    • Mark


      My seizure, 8/28 (the day this blog was posted!)
      My surgery, Last Tuesday, 12/2.
      The Dr. got up to 90% of the memingioma and we’re still waiting to find out if it’s totally benign.(fingers crossed)
      I’ve been taking Keppra (generic) since the seizure and I agree, I get tired and I can go from zero to 60 on the cranky-meter. My neurologist has discussed alternatives but I wanted to get the operation over first. There are many other options. I have several friends who don’t like Keppra especially because they’re dosage is, or was, higher and it’s effects are obvious.
      If you want, I’ll let you know what I switch to…

      • Eileen

        First of all hope your results were: BENIGN and your recovery is going as expected without too many issues.

        I still have erratic mood swings, but they seem less often now. I am on the generic version of Keppra (Lev . . .) as well. Just use the “K” description because of it is easier to say/spell. I think some of my side effects have slowed down over time. Although, after talking to my neurologist 2 weeks ago, I will probably be taking this for at least a year. Good Grief!

        I was given the “okay” to drive now, but I am not doing that because of the inclement weather conditions here. Please let me know what you switched to, if it is not Keppra now. I’m interested in what was prescribed.

        Thank you for your reply, I didn’t respond earlier because I had not seen this until last night.

        Stay happy, stay healthy.

        Thanks. E.C.

        • Tanya B.

          I had meningioma (Left frontal lobe)surgery June 7, 2013. I was put on Keppra before the surgery and one year after, which will be at my appt this July 24th. then I will have an MRI and the neurosurgeon will let me know if its growing back and tell me what’s going on with the other small one in the sphenoid region. The keppra has worked really well with hardly any side effects. i just get a little dizzy from it every now and then. But getting the thing out of my head is well worth taking the Keppra. Brain surgery is MAJOR surgery. Heck even the bunionectomy I had took a year for the swelling to completely go away. Imagine what it’s like for you head!

          I talked to my students and showed them my scans (music teacher) and they followed along with me. I found it very therapeutic to help others understand in case it ever happens to them. Just like this blog I’ve been reading.


    • trish

      I have a seizure disorder and have lots of the same issues as other commenters here. I love the term “My New Normal” because that is what is eventually becomes; normal- a part of who you are.

      —-KEPPRA— turned me into an aggressive, raging, uncontrollable mess. I went into irrational fits about inconsequential events. I tried really hard to tough through the 6-8 weeks my neuro said it would take for the drug levels to normalize in my system, but finally said I couldn’t do it anymore. I was losing 3 or 4 pounds a week and had just taken my kitchen shears to my shoulder length hair because I was painting and got some black pant in it. Looking in the mirror and seeing myself looking like a gaunt skull with my hair cut off in big chunks put me right over the edge and I said enough is enough.

      • trish

        *paint -oops

        But anyway, “my new normal” is okay and I’m happy with the way life is now. My medical issues are not gone, but they have stabilized with the right meds. I still have weird symptoms that most people without brain issues will never experience but I can be okay with that, My seizure disorder may kill me someday and probably will, but for now I will live the best I can. Like most people, I didn’t come with an expiration date stamped on my butt so I will live my life assuming I haven’t gone past my “best if used by” date.

  • Kuromi

    Thank you for this as it’s reassured me that a lot of what I am experiencing is normal. Ok, so I didn’t have to have my skull actually opened up as my tumour was growing on the outside of my skull, but I have had my skull drilled/shaved or something and also have a shaved patch and a nice row of stitches to show for it. I won’t have all of your symptoms because I didn’t have anyone poking in my brain, but certainly the headaches, sore throats, scar tissue etc is what I’m going through. Thank you for this insight though as it is hard to find any info online and I wasn’t given any info at the hospital just pretty much packed up and sent on my way. I’ve had an allergic reaction to whatever chemical was used on my head during surgery (no one wanted to come see me to confirm what it was so I’ve just been left with blisters and scabs) and now I have a pain from my scar down my neck. Anyone else experienced this? I’m unsure if this is as a result of the surgery, the way I’m sleeping or nerves or what, because I also have another lump there which is hurting which I am now going to have checked out just I case it turns out to be another tumour.

  • Theresa B

    I had an emergency removal of a subdural hematoma after a fall. I fell in December of 2012 and was not properly diagnosed and ended up having emergency surgery on February 12, 2013. It had been bleeding in my head all along. I was searching the internet for info on having multiple headaches daily when I came across this- something I have recently been noticing . THANK YOU! Sometimes I feel like a stranger in a strange land living my life. Your 20 Things was very timely and made me feel so much better.

    • Alex

      Hi Theresa,

      I had a similar experience due to an Epidural Hematoma – It was a freak accident and the ER almost didn’t catch it. I was 8 years ago and I’m still seeing some of the side effects, I’m glad I’m not the only one.

      Geraldine: you COULDN’T have said it better about the staples- I was only 21 when my accident happened and since it was emergency surgery, my head was shaved. Clearly,now I’m so grateful to be okay, but I cried everyday for the entire summer thereafter.

      Thank you for posting. I hope everyone is now well.It helps to know I’m NOT alone


  • I have a secondary regrowing mets in my brain. It’s in the frontal lobe and surgeon not willing because of quality of life issues after surgery. I have had full brain radiation and steriotactic treatment. Now awaiting more scans at the end of the month but to be honest I am very worried about prospect of surgery

    • Sandy Martin

      I hope you’re feeling better. My sister’s just had brain surgery for a chronic subdural hemotoma too 2 weeks ago followed by a stroke 7 days ago. Her blood pressure dropped dangerously twice, and we are so concerned. Her speech is partially impaired and cognition weak. She’s in good spirits and seems pain-free which is so great. Any advice would be so helpful.

  • karen

    Hello. Thank you for sharing you experience. I am week 4 today. I cant lie, its been tough. Dont really remember the first 2 weeks. You are right the meds are a real, well you know. In week 4 I am discovering that I get very tired. Sleep patterns are all messed up. When I need to rest if I dont I want to cry. My feelings are easily hurt. And people are tired of this, everyone (my husband) seems to think its been 4 weeks its over. Time to get up and get things done. Like get the laundry done or dinner. I have more energy in the am then later in the day. Just wasnt prepared for the emotional part. Never even thought about the recovery part.

  • I finally bit the bullet and Googled “Brain Surgery”. A lot of stuff scared me to death or confused the hell out of me, but then I found your site. Reading your letter made me laugh, cry, and most importantly feel better. I have a lemon sized tumor, hopefully benign, coming out in February. I have a great support group, but reading this made me feel connected to someone who truly understands. I’m 33; I got stuff to do, so I also needed something to help me look forward to a future that I refuse to accept will not exist. Thank you for taking the time to write this.

  • debbie p

    I found your blog while looking for what I can expect after my brothers brain tumor removal in less that 24 hrs. Thank you for sharing it with a sense of humor…and for being real about it. As a sister I am think I am more afraid of the recovery than he is…Glad I read your 20 things to expect…great information and will help in understanding his recovery better.

  • Deborah Moone

    I had brain surgery five weeks ago and I feel like my eye sight is different.

    • Everywhereist

      Hey Deborah –

      Are you on steroids? I know that my eyesight was temporarily effected by the medication I was on – I’ve heard people experience similar things when on high doses of steroids. I found it went away after a few weeks.

    • Analie Cangco

      =( my eyesight is poor too, it’s just different. I think I loosed my depth perception I was having a hard time recognizing holes, ramps, stairs, etc..

    • hl

      my eyes refused to cooperate with each other, so i was seeing double, and depth perception was way off. be careful on strange stairs. it is almost ok now, 9 months later.

  • Clinton

    Well iv got my surgery next week sometime when my neurosurgeon calls. Im freaking out about all the blogs people write about there crainontomy before and after but best I bite the bullet and push on with it.

  • Thank you for this post. My 12-year-old son has been having seizures and they’ve traced it to a tumor that will likely be removed in a month or two. We just found out on Friday, and the neurologist and neurosurgeon made it sound like a piece of cake, but I’ve just now been brave enough to do a bit of searching on what to expect post-surgery.

    Your post is honest and will be helpful in keeping us patient as he recovers, as long as it takes. Thank you.

  • Lorna

    Intraventricular Meningioma,,6 months post op.Still a bit lost and having cognitive issues but I am Alive!! Good luck to all….

  • Christina

    I had my brain surgery on October11… I really appreciate everyone with all the information. I know those nerves are just heywire. Its likeso litlle shocks every oncegirl in athe while….I had a canvourous malformation in the front of my brain. I am very forgetful….lol like spelling and what I want to say.. but I am doing good. My vision is off alittle. Thank you all for all the information!

    • Everywhereist

      Christina – I promise, the weird nerve stuff DOES get better! It just takes some time.

      • Analie Cangco

        =( har brain tumor removed last march 2013, and brain shunt fitted last August 2013. My vision keeps me worrying all the time. I just feel staying home safe, it feels weird and having a hard time whenever I’m out cause of my vision bothers me a lot.

        • karen

          My tumor was removed 10/2010, still finding it easier to stay home. Still dificult functioning. I related to your one statement = home. But I do often wonder if its Ok?

  • Kandice

    My boyfriend just had surgery 4 days ago and this list helped me understand what to expect and brought a smile to my face. He is very scared of losing memory and speech…im just so thankful he isalive. I wish all of you the best. Thank you so much for your post.

  • Karen Alexis

    When I was finally able to pull myself together, your blog kept me encouraged. Your words gave me hope. Reading your blog made me feel that I was not in this alone. On October 22, 2013 I had brain surgery to remove a benign brain tumor. The experience is devastating. Its a hard pill to swallow. Your “20 things” list is RIGHT ON. Soo true!!! You are amazing for sharing your talent of writing with the world, and I thank you for helping me through this. Much love.

  • mandy h

    I had only bad headaches as my symptoms..when I had hand / arms checks and eye test nothing showed, trying to get some sleep a surgery due tomorrow

  • Hi ya peeps. I have just had a left temporal lobe brain tumor removed and i wish i read the 20 facts written by Everywhereist. You made me laugh and i experienced most of your points.

    When i punish and go hard on myself regardin my weaknesses my nurses tell me to stop talking and acknowledge the fact that i have just had ‘brain surgery’.

    What happens in life happens and totally think differently now. Every morning i wake up and look at my scar, take a deep breath and smile because things could have been worst.

    My advice peeps is keep your chin up, be positive, talk to friends and family and make time to think about your past, present and future because you will have one.

    Takecare all 🙂

    • Sheryl

      I am so grateful that you have all joined into this conversation.
      What a gift to have a community – sort of an odd community, but nonetheless a community. One week after tumor resection. Waiting to know what might happen next, what IS it?! These feelings/experiences are helping me deal with the present – meds, etc. I am not alone.

      Thank you all for sharing thoughtfully, with kindness.

      I will continue to read – and post.


  • Denise

    How did you get the snarls out of your hair and the gook.My best friend just had brain surgery I spent 2 hours combing out knots and only got about a 6 in patch untangled. Does anyone have any tricks I’m patient and will take the time to complete it but its hard on her.

    • Everywhereist

      Honestly, I had leftover grease in my hair for about two to three weeks after my surgery. I just did a lot of gentle shampooing, a lot of conditioner, and patience. I didn’t have too many snarls – probably because of all that damn surgical grease.

    • Eileen

      A little late suggestion – but Johnson & Johnson baby detangler wouls be great – veeery gentle.

  • Cassandra

    I’m 14 in I’m getting the surgery ….. I’m just really scared and want to know how much it hurts?

    • Everywhereist

      Cassandra – honestly, I think you are really lucky to be having the surgery so young. My friend had brain surgery when she was 9, and I think you bounce back a lot quicker and recover more easily when you are a kid or a teenager. Just be patient with yourself. As for the pain, don’t worry – it really doesn’t hurt that badly. Honest. And the doctors will make sure you are comfortable and not in any sort of pain.

    • Terri

      14. Of course you are scared. I had my brain tumor removed 3 1/2 weeks ago. I cannot express how amazed everyone is that I get online and talk and do normal things. I get headaches easy after being online too long. I have to remember to take short periods of doing different things, tv for a bit, reading for a bit (I love to read so I often get into a book and give myself a headache).just pace yourself. Don’t over-do anything. And take time to rest. My son is 14….talk to.people,.don’t keep your feelings bottled up. I am from Arkansas. This actually is a pretty neat blog, I haven’t even seen it til just now.

      • Terri

        And she’s right, the pain isn’t anything like you think. Not horrible. My headaches before were way worse than any pain since.

  • Marg

    Glad I found your post but wished I had found it earlier. Had Brain surgery 4 mths ago and now after reading this I feel I should and can be kinder to myself THANKYOU. Know what you mean it took a few goes at writing this to get it correct .

  • Wow! I tried my best to understand the hallucinations my hubby is having after a 9cm tumor was removed from his right frontal lobe, he is very angry, and hears and sees things that are not real. There was lots of swelling so we are trying to help him remain calm, but he can’t sleep much since that is happening. He is 84 years, which means an older brain.
    He was told he had 3 months or have surgery and gain 6 months to a year. He chose the latter.
    He has a therapist trying to help him relearn to get rid of his anger, but she is there twice a week he needs her daily.
    We pray lots, and you helped by your honesty… Thanks

    • ann

      Continue the prayers we serve a mighty awesome God that can move mountains. I just had brain surgery this week and God has brought me through a mighty way. Everything I read on here has not effected me because I have put my complete trust in Gods hands. You will be in my prayers God bless you. I’m 64.

  • Margaret deRouleaux

    I was researching stuff on brain surgery because my dearest friend will have a brain tumor excised next Monday and found this blog. She doesn’t want to know anything about what may/will happen so I read it for her and I’m very thankful for all it contains. It might help me cope a bit better with the prospect of her extremely frightening experience (before, during, and after) and I thank you for your honestly, wit, humor and courage in expressing all these things.

  • MissJulie

    Thank you for this. I am 33 years old having a 4.5 cm tumor removed from my brain in 2 weeks, 6 days, 10 hours… Thank you for your honesty and humor, these steroids are making me a crazy bitch. I’m crying, grinding my teeth, sweating in addition to the constant rewind/replay of the whole effing experience. There is a tumor in my brain and someones gonna take it out?!! Surreal. Thank U

    • Karen Smith


  • I love reading others stories of their brain surgery. It is especially true how everything falls either “before brain surgery” or “after brain surgery”

    I had my first one in July 2007 and I’m in between my 4th and 5th one right now. Basically had to remove the piece they put in and replace it.

    I’ve started my own blog to share my journey as well:

    • Everywhereist

      Holy cow, Natalie. Five brain surgeries? Girl, you should get a medal. Or some sort of deal with the hospital where the fifth brain surgery is free. 🙂

    • Analie Cangco

      =) is it the brain shunt ur talking they put inside ur head? I had mine too fitted last August 7, 2013… Hopefully no need for revision or anything… Recovery period is a journey of acceptance… Nice to know that ur still alive after everything you’ve experienced. My 2×2 sized pix tumor totally removed last March 5, 2013. My surgeon refused to do the brain shunt procedure as he’s hoping no need for it after the tumor removal. April CT-scan revealed further dilatation.. My surgeon gave me this medicine named Acetozolamide TID, another confinement last May 20, 2013 for lumbar puncture, brain compression and observations done. I stayed at the hospital for 5 days, and I went home to continue meds and the brain compression. This simply won’t work on me, as hydrocephalus symptoms ate me. The cognitive problems scares me a lot, put me deniably of it till I loose control and I dunno what has been happened. They say, I acted like a child as if there is no hope for me then. I hardly walk so they put me into a wheelchair. I loss my appetite so I get skinny. From 57kg on March, down to 40kg last July… I remember loosing weight since the operation. Steroids for 2 weeks put u to indulge more for food. But after that I tend to drink more than eat solid foods. My swallowing reflex got affected too, as evidenced of drinking for more water to swallow my meds.. Very simple as u thought of it, but a real hard time on me. I remember to suffer from lactose intolerance. Bowel movements is just different, sometimes uncontrolled and sometimes I suffer from constipation. I also stop menstruating after the first operation.. I know something is wrong and abnormal inside of me. Till the month of August I just woke up inside the hospital. It’s been a scary experience knowing nothing… I remember some hallucinations that I keep telling myself that it wasn’t real. As the days passed, I realized I was hospitalized for brain shuntting..everything seems turns back to normal. No more hallucinations, better bladder control, I finally can walk! Etc.. Too many questions on my mind has been answered and everything seems clear and right for me. August 27, 2013 my follow up check up & the surgeon seems happy to see me and I found myself fully delighted. September 28, 2013 when I finally got my period back! How happy I am realizing that everything seems normal inside. October 22, 2013 another check up & he told me to resume work by next year. November when my brother decided to enroll me to every Saturday classes only. It seems hard at first, but as the days pass it seems to be amazingly improving.

  • As I read your blog, my wife is three hours into a transsphenoidal procedure with possible craniotomy to remove a 5.4 x 4.9 x 4.4 cm tumor in the right frontal lobe. Surgery time-frame was indicated to be five to six hours.

    I always suspected that there might be personality changes in both the short and long term. We hope post operation that her eyesight will be restored to normalcy. It is tough for the family, as she had to be in hospital by herself. I was not possible for me to be there with her. It is a miracle, that she if where she can get the necessary help.

    I will direct her to your blog as she recovers and is able to again use the computer. All in all, she has already been away for thirteen days; with an outlook of two to several months expected.

    She was in good spirits as she was preparing for the OR this morning.

    I imagine holding her hand to calm her this day………

    Thanks and I’ll keep reading to learn how to help her cope.

    • Terri

      I’m curious…what state did your wife have surgery in?

  • april

    Thank you for making laugh. Everything you listed is was so true for me! It’s been a year and a half now since my surgery to remove a cavernoma from my cerebellum. I really enjoyed when you describe having the attention span of a goldfish because in the weeks following surgery, my fiance told me I would repeat the same story over and over… I don’t recall! This is the first post I’ve read on your blog, I look forward to reading the rest!

  • Jackie T

    We just discovered two weeks ago yesterday that my precious younger brother Danny has Glioblastoma at 53 years-old. He is the most wonderful, bigger-than-life, fun-loving brother and man in the whole world. He just went through 2 surgeries in the last two weeks, the second last Thursday. He is not doing well mentally and emotionally at all. His girlfriend found this blog when we were both looking for HOPE! I wish we had found it to read to him before the second surgery, it may have helped. We are waiting to read it to him now as soon as we think he will be able to appreciate your wit and honesty. I want you to know it provided a little light of humor for us during this ~ my worst nightmare come true. He is my best-friend, my baby brother, my rock.

  • Carol

    I am helping someone I love thru brain surgery.
    It’s HARD.
    Don’t forget to help the helpers out there; it’s really
    hard to deal with someone you love that
    doesn’t remember. When they make really
    strange comments, it’s hard to not break down
    and cry which you can’t do right in front of them.
    On top of the work they cannot do that they used
    to do, you have more work in taking care of the
    patient. It’s like all of sudden you have THREE
    TIMES THE WORK. Everyone seems to only
    pay attention to the sick person.
    Appreciate the work of the helper.

    • Sharon

      Amen. I have 4 kids…and now 5, with my husband who just had a mixed tumor the size of a tennis ball removed two weeks ago from the right frontal lobe. It was all so sudden with a gran mal siezure as the only clue…no one warned us that there is no going back to normal. I want to be allowed to mourn the loss of my support, my helper, my partner. Now I have a 5th child who can’t help me parent because I need to parent him too – “where are you wandering off to?” “Stop eating the baby’s food!” “Your pants are inside out and your shirt is backward.” I weep in sorrow and frustration – I never knew.

  • Shadyrock

    My Wife just had brain surgery a week ago and is doing great. she has some issues with writing and is a little shackey . she also has some issues with constipation and concentration but I’m so proud of her and I know each day she will get better. she refuses to take strong meds so she is sticking with Steroids and Tylenol along with a seizure med.
    Everyone is different but she is amazing and the Doctors have all said she is Awesome.
    Hang in there people and stay positive .

  • Analie Cangco

    =) had brain surgeries too. (March 2013 & August 2013)

  • Analie Cangco

    =) January 14, 2013 had to go to ophthalmologist due to blurring of vision and intermittent loss of vision. I was shock then when he ordered me for CT-Scan. Same day I do the CT-Scan and to find out that I have brain tumor ranging 2×2 size pix. I have no headaches, but I remember that I got dizzy & vomits last November 2012. I am hearing impaired to my right ear, and diagnosed to be profound deaf. Anyway, last March 2013 was my operation for the removal of tumor at my brain stem. It went 8hours to remove the tumor, and biosy says it benign tumor. The surgery left me right face paralyzed. 8 hours in the OR, 1 hour at the recovery room, 24 hours stay at the iCU, and stay at the hospital for 1 week. At home, I remember no pain.. Till month of April my sutured area got inflamed, and my staplers left unremoved. I was given Acetozolamide 3x a day, and ordered for another CTscan. It revealed inflamed brain stem and operated site. I was ordered to be confine again for lumbar puncture and brain compression. I was observed and lumbar puncture simply doesn’t work. I was discharged from the hospital after 5 days. I was ordered brain compression and to continue with Acetozolamide. Taking the medicine makes me feel full and always thirsty.. I loose weight because o poor appetite, and always urinating that keeps me awake all thru night sleep time. I had sleepless night which keeps me asleep the whole day. I remember after eating breakfast and lunch I go back to sleep. I was having a hard time to stay awake at day time, I easily got exhausted, and I agree afore mention above as I experience the same thing. I remember taking steroids for 1 week after discharge. Steroids makes me always hungry, craving more for foods, it made me moody too, and I notice acne all over my face as I don’t have them before. I was given Lactulose as I having a hard time to poop. I remember when I first awake from anesthesia that I am so bad asking for water, I used straw then as I am not able to drink in a glass. I am totally dependent and nothing had nothing to do but to totally surrender myself with the people around me. I got muscle wasting, all my pants and even garterized shorts are not fitting me well. I loosed weight, before the surgery I am 57kg, and down to 48kg that fast. It was late June and the whole month of July, my confusion begins.. I remember some but not fully detailed. Month of August when I underwent to another surgery, because hydrocephalus persisted. Brain shunt have to be fitted. I remember having a hard time with this one. I am totally confused, and unaware of everything. I am 2 weeks in the hospital, that long that I am yearning to go home. Non stop NPO kills me. I always vomit and I remember them saying that it was the anesthesia. My head feels like falling, I can’t handle it. I remember carrying me around, suffered from ataxia as if they are teaching me to walk for the first time. That was not easy, even when I got home. Again, I am totally dependent for about a week. On my second week at home, things start to back to normal to me. As I have still poor balance but I use to walk little by little with ease. Everything seems new to me, but learns to be more thankful as I am alive. I strongly believe that my sufferings today, they won’t last.. It will definitely fall into place in time. My check ups scheduled 2 weeks after the discharged, 2 months last October then another 2 months this early January. Last November I started studying again to use my brain as my doctor forebide me to go back to work. Time passed, have to catch up. I always pray for a complete recovery. I still suffering with the right face paralysis, poor balance, and my vision that I can’t go to mall alone as lights makes me dizzy and oh my vision is really my concern for now. Anyone feeling the same with the vision thing? I am loosing my depth perception.

  • HELLER!!! I kinda just ran a cross your blog by accident while trying to find some inspirational, hopeful information on how to get back to working after brain surgery. Yes I too had a gulf ball removed from my left temporal lobe & it’s been a year & 3 months….but who’s counting, right? I did the chemo & radiation thing once and I will never do that again. Aside from the brain intrusion I have seizures …YAY!!!!!!!!! ….(hate taking those meds). My energy is up and down but my mind doesn’t stop having thoughts of one day RULING THE WORLD (Beyonce song in back WHO RUNS THE WORLD, GIRLS). OK, so back on track. I just don’t know what to do and Im looking for people who can relate. One of my problems is I just don’t want any old “job”, so I can one day get laid off AGAIN. Yes Before my surgery both my husband & I were laid off from our jobs in NYC & literally lost everything; and almost each other. After I was feeling better we decided to move with our two kids & dog (that’s another story) to Florida. Yeah Florida, the sunshine state & not so much fashionable or trendy I might add. Anyway, now that we are here he’s busting his ARSE, to barely get us by & Im sitting home with used pieces of tattered furniture, makeshift curtains, renting a house from a slum lord who tricked us into paying all the utilities for both us & the neighbor, wondering, “Is this my life? WTF!”. I keep trying to make a blog.No, no, no, really I’ve actually designed a couple made some content, but when I get frustrated I just wind up deleting them because I don’t know what to write, or correction have too many different things to write about. Also, how the heck am I supposed to buy a Xmas tree & presents for the kids with a freekin’ blog! My apologies, I just needed to vent…Ummm I forget my point. Oh yeah, just wanted to say I read your blog on 20 Things You Can Expect After Brain Surgery and I posted it to my FB Page Facebook.com/BrainTumorHealing. Thanks for your post & I hope you didn’t mind my declamation.

  • Mary

    I had a 1.3 cm cancerous tumor removed Thursday. I was able to leave the hospital on Saturday. I’ve been very tired all day today and cranky from steroids. Hubby is worried about me being so tired but I think it’s Ok. Having another tumor removed in January

    • Everywhereist

      Mary – I was so incredibly tired after my surgery. I slept for about a week – much of it was the anesthesia, which hit me pretty hard. Give yourself time! It was probably close to three weeks before I could stay up all day without needing a nap. Best of luck with your upcoming surgery!

    • Mark


      I had my surgery on Tuesday and wasn’t home until Friday. You only did 3 days so you win! Seriously, that’s a quick turnaround and you have the right to indulge yourself with sleep and entertainment and visitors and, if you don’t want, or get that stuff from others, give it to yourself. It’s not selfish, it’s personal.
      Now that you’ve done it once you’ll be a pro for round 2. Congratulations and good luck!

  • Nikki

    To the person that wrote the original post so true. All the comments covered the compliments of it being awesome, right on the mark and funny. I am three weeks post op partial craniotomy. Your attention to detail was great. Wish I would of read this before surgery. Thought I had turned into a beast after surgery. Now I understand why! Thank you!

    • melanie

      Thank you all for so many comments. Our beloved sister is 2 weeks post craniology for a subdural hemotoma…it’s so scary…they think she’s also had a stroke, and today, extremely low blood pressure and now back up to normal but she’s sleeping all day. Help!! Thank you all.

  • Mark

    I tried to read your list of 70 in between my MRI and my procedure last week but I couldn’t concentrate. I bookmarked it on my iphone and read it in the early morning, 3AM, in the recovery ward.
    You’re funny, and sensitive and clearly reflective.
    I’ve been writing a lot since I got home and I want to thank you for your inspiration.
    I found this list of 20 this morning after my writing session. I noticed that you’ve refined and qualitatively improved the original “dump” as you put it, which is very poignant to me, since my work seems to be bleeding and merging into the thoughts and inspirations of what I was working on before my surgery.
    I actually feel very fortunate to have this experience as a filter for my life and I need to thank you again for your help.

  • Regina Tañedo

    I just had my brain surgery 5 days ago, dec 5, 2013. I did not have time to prepare myself, much less read anything about BS because it was an emergency surgery. My face went a little numb, I vomitted then got dizzy. Went to ER, had CT scan, then 2 MRIs. Surgery. It happened so fast, I resolved to leave everything to God and trust the doctors who were in charge of me. I still do not know if the growth was benign or malignant. We won’t know till Friday. But your blog prepares me for the wonderful days/months/years ahead of me. I hope my Friday appointment brings good news. Thanks!

    • Callysmom

      Praying for you Regina, I hope it is not malignant and you are done with treatment!!!!!!!!!

      I had an orange sized menengioma that was growing for 30ish years. %70 was removed in a 17 hour surgery.It was 4 months before I got home to my precious Cally, my yorkie. It is 8 years later and I’m ok, but my Cally went home and I feel kinda lost without her now, she made me feel normal again. I did not prepare myself (or my family) because I couldn’t talk about it, so my sister and my daughter thought I’d be home in a week…..I just couldn’t face it. I can’t believe you can write/type!!!!!!! Already! that’s a good sign!!!

      The whole thing renewed my hope in people again, and my faith in Jesus for getting me thru it all. Tho I am without my best friend Cally, I learned there are some really beautiful people still in this world. I am 62 now, and it is getting harder without my precious Cally to make me feel normal.

      A surgeon nipped a nerve, and now I live with some difficulties, ‘stroke like’ problems, but I press on, looking to my Savior.

      May God bless you richly all who have endured this…………………it is sure traumatic eh?

  • Sharon Stokes

    Brilliant blog……………found out that i had a substaintial brain tumor july2013.after a year of headaches that woke me during the night ..after three surgery cancellations due to lack of beds!!………..my operation went ahead October 15th 2013.Eight hours in theatre my opeartion was a sucess……..my tumor is benign…………I have lost all taste and smell and this will not return but as my tumor was lay on my optical nerves i have been extremely lucky. Got follow up appointment 11th january 2014.I still cannot that my head has been opened up and someone has been rumaging around in there its sureal………we are all brave and find strength … I wish all of you speedy recoveries and fulfilled happy lives “After the rain always comes the sunshine”

  • Victoria

    Reading this post today, I really wish I’d seen it earlier. My suboccipital craniectomy and c-1 laminectomy was 25 May, 2012. They didn’t even open the dura, and I had a *bunch* of these recovery symptoms. They’re still not sure why only the left side of my tongue was completely numb for two days post-op. My surgery was not for a tumor, like so many of you, mine was for a Chiari Malformation type 1. It’s so nice to see something like this posted in a funny and helpful way. When I have my next surgery, I’ll have to remember to forward this link to my family. 🙂 Thank you for sharing your experience.

  • Dana

    My brain surgery was four years ago and I wish I had seen something like this back then. Very funny and right on target!

  • April

    I love this list, thank you for writing it. I might add that depending upon where the surgery is the affects of the tumor and surgery will differ. Frontal Lobe is where the personality/feelings are stored and so surgery in this area will affect how a person reacts to situations, and their personality may completely change. I am a 14 year survivor and even though I am a lot better, I still have issues. For those of you just having this surgery/recently recovering, be patient with your recovery it will take as long as it takes. I would also suggest joining a support group with people who either have had a brain tumor or join a group with other people with brain injuries. Also, no two brain injuries are the same, someone with an injury in the same area may be doing better or worse than you. Thanks again for writing this!

  • Tarin

    Thank you 🙂

    I am scared, this helped.

  • Michele Patton

    Had Surgery last year Nov. 2012. Spent 17 days in ICU and everything that could go wrong did. The meds helped a little but I dreamt a lot or hallucinated one of the two. When I stepped down from the ICU I remember having a terrific team to take care of me. Was both happy and sorry to Go to rehab after the first month. But, I got to go home after the holidays.
    Had speech, physical and occupational therapy for over 9 months. Learn to eat and talk again by myself. my vocal cord is paralysed so I don’t sound like myself. Have learn to use my left hand rather then the right. still can not walk by myself or even drive. (Now that’s the pits) Hopefully, I be myself in another year. I now live by myself and do the work around the house myself. Had help moving in and my family does what they can. I try harder for them. Motivation is what keep you going. Just so you know my cyst orginially was 1 x 1 x 2 cm and grew in 6 months to 5 x 6 x 2 cm. Surgery took 8 1/2 hours. Thank God is in control.

  • Liz Carroll

    Hello. I had an AVM removed on the 18th. Nov this year. I think I’m doing very well and haven’t suffered any kind of damage. I have had to put up with some post surgery seizures and had to go to get a stitch removed that had been left in just yesterday. I’m not in pain now at all, but I am drinking water LOTS which I know really helps. I sometimes get jelly leg tired and would love a magician to tell me when that might stop, but otherwise I know I’m doing very well. Thank you for this fantastic post x

    • Franklin

      Hello, I had an avm removed on April 14, 2014. I had a seizure on October 1, 2014 just before getting into my car to go home from work. I was told my seizure might have been caused by sleep deprivation and because I was not on Levetiracetam. I was only taking 750mg of Levetiracetam twice a day for 30 days after my surgery and stopped taking it per doctors recommendations. After my seizure I am back on 750mg of Levetiracetam twice a day. During my seizure I was shaking for a few minutes and was disoriented for at least 20 mins. I woke up and realized what was going on when I was getting put into the ambulance. I feel very blessed that I didnt get in my car but I am scared as now I dont know what to expect moving forward. Any suggestions????


  • HitsHome

    This hits home in a sad way ……. when I was 14, my dad had a brain tumor and had to have surgery — thankfully he’s doing well and is now a health/exercise nut.

  • Helen Clark

    As far as the having surgery on your brain, the brain has no nerves.

    • Everywhereist

      Yes, but the layers of skin and tissue they have to cut through to get to your brain do have nerves. Plenty of them.

  • I am a caretaker of my son (39) who had brain surgery on 4/24/13 (his birthday), 14 hours on table, 9 centimeter tumor.
    He had leukemia at 9 and they did full head radiation at that time, hence brain tumor manigoma 30 years later. Surgeon couldn’t get it all, 33 proton radiation treatments beginning October 29th, just finished. Scan in 2 months to see if they got it all. They also see two more small manigomas present. He has come through ok. But this first blog, wish we would have read back in April. I would like to talk to other caretakers out there. As his Mom (dad died) would like to know how they deal with these issues. Sometimes I lose my way.

  • Dizzy E

    Thank you so much for this, Ev.

    I had a meningioma removed from my left parietal on Sept 18, 7cm around and 3cm deep. Grade 2. They said that it could have been 10 years old, as I had radiation when I was 4, around 1974.

    Most parts of the recovery went smoothly and I had a lot of help, you’re right about asking and surrounding yourself with good people. They sometimes come out of the woodwork for you, we need to humbly take advantage of that. Just let your friends know your time limits on visits, we all know that we tire easily.

    I do still struggle mightily with tinnitus and dizziness and a weird vibration/buzzing inside my skull it seems. ENT Dr’s don’t seem to know too much but my neurologist might, I’m in the early stages of taking Elavil, she said we need to treat this like a brain injury (which is pretty much is). Despite all my efforts can only work PT without having a lot of complications. I’m burning through my FMLA time quickly.

    Has anyone has this sensation of your brain being scrambled by a buzzing/shaking?

    The OP is right on, and I might add that what else helped is acupuncture, reiki, massage, 1 mile walks, and calling friends. They’re expecting your call.

    • Analie Cangco

      =) oh… I’m experiencing the same! The tinnitus and dizziness thing… My right ear ( my incision at the back of my right ear ) keeps on ringing! As in, it bothers me a lot. I just keep myself busy trying to don’t care about it. The ENT have said that I should just let it be and no medications needed. The dizziness arise whenever I’m changing positions lying on bed. I should put lots of soft pillows, on top of it is my memory pillow to handle my sensitive/fragile head as I describe it. A little shaky feeling of my head too, as if there is space on it.. Buzzing? Can’t imagine

    • Owlpaca

      I too have vibrations in my head…they started a year AFTER brain surgery. I also have Premature heart beats now that started at the same time. I immediately went to a cardiac Dr. and was put on high blood pressure meds (even tho I did not have high blood pressure…it helped a little) and Magnesium…the Magnesium worked best for the Premature heart beats. I have finally gone to to a Neurologist (who is not my Neurosurgeon) and she put me on B2 and now some medication that is also used for depression. She is treating my vibrations like a migraine…even tho there is no pain. The vibrations keep me awake and I feel them when I sit down to relax or go to bed or wake up…very irritating. I too wish I knew why they started. I have trying not chewing, massage, etc. No ringing in my ears tho.

      • Salman

        I also felt these popping , vibrating , ticking noises, they resonate more with raging pulse. My surgeon says its normal as bone , plates etc are adjusting and making there place.

        • Madie

          Hi there
          I had suboccipital craniotomy 7 weeks back and having this kind of tinnitus.
          It’s very disturbing and how are you feeling now?
          Iam hoping this tinnitus will go away

          • Owlpaca

            I have found that my most effect “potion” is a low dosage high blood pressure med once a day, 800 mil of Magnesium, and 100 mil of Butterbur. I take 400 of the Mag in AM and in PM, with the Butterbur at night. Most of the time I don’t feel my premature heart beats and my vibrations are down to a very low feel so that I can sleep. I don’t normally don’t feel anything except at night, but now I can sleep. I did not know it was a form of tinnitus…but that kind of makes sense with all of the metal in my head.

  • Ben

    Thanks for your top 20 list! I have brain surgery coming up on 1/8 to remove a low grade astrocytoma from my right parietal lobe. Looks like effects of surgery and recovery will be more than I was thinking! I’m 38, married with 3 sons, and eligible to retire in 5 and half years. I was fully planning on living to at least 85 until about 10 days ago. Crazy how life can change in an instant! Having surgery at John Hopkins, so I’m feeling good about that. Thanks again for sharing your experience and insight.

  • Thank you. Just had brain surgery, right frontal lobe, your 20 things were literally the best thing I read both pre and post-op and I bought all the stupid books. The laundry tip was so helpful. You should write a book, because I spent hella money on books that did NOT help.

  • Natasha

    how great it is to know so many of us ‘get this.’ easy enough to feel very alone (even in a house with husband and kids), but unexpectedly running across blogs or sites like this sure help. my surgery was august 9, a bit of it was unexpected in that it was originally a selective amygdalo-hippocampectomy for a lesion, but they also found mesial sclerosis, removed that as well as an arachnoid cyst. three removals at once, yikes. i’m 4.5 months post-op and for the most part am only having memory issues, which they mentioned as a problem beforehand.
    145 days seizure free, very happy about that. however it is something i have to force myself to do. some of the closest people in my life (hubby, mom, best friend) have been quite wrapped up in their own issues to focus in any way on what i’m going through, what i need. astonishing to me. heartbreaking really, but i keep putting up the big fight. for me.
    everything has actually been shocking; turned out to be cortical dysplasia meaning the lesion was there pre-birth. they’re confident however that with removing it all i am in the #1 category of never having a seizure again. well after 20 years with epilepsy that’s so awesome, but also too surreal.
    as was posted on the blog, it all is. i still can’t ‘wrap’ my head around it all, and am somewhat worried it will stay like that. to me it seems like a real distraction that in some ways interrupts me from tyring to learn a normal ‘new’ life. how’s that going to happen when i don’t recognize a huge part of myself nor the unexpected behaviour of loved ones. other than a few close women i feel like i went through post-op alone. i’m trying to shake it off b/c all that matters at the end of the day is being seizure-free, but it”s a daily struggle. and i’m done with struggles that’s why i did this. hmmm. my silver lining b/c we all have to have them, is having the best neurosurgeon possible. onward and upward 🙂

  • Isabella Russell-Ides

    My nine-year-old grandson had tumor removed from top of brain stem after 6 rounds of chemo to kill the malignant cells. He burst into tears today when I mentioned his dog. “I forgot I had a dog.” I was so glad I’d read your blog. I was able to explain that he’d be experiencing lots of cognitive glitches and erratic emotional weather.

    He is also breaking out in welts…as if he had been attacked by by swarms of giant mosquitoes and no one seems to know why? Could it be after effects of the steroids?


  • This is absolutely great! I googled looking for a post or article about the effects “years after” brain surgeries (my situation), and came across this one. Thanks! Soooo good and true. I wrote this article about my experience, a bit of a less detailed and more big picture–maybe? Different, but the same, kinda. http://www.newsweek.com/lessons-brain-tumor-84359

  • msngmycally

    i had a 17 hour surgery, it was so hard, I begged the Lord to take me home. it was 41/2 months away from cally, my yorkie. had to relearn how to walk again. drank thickned water, had to learn to eat after a feeding tube,8 years later I am just beginning to find a new me and let go of things i can no longer do. but i lived to see my grandaughter born, not literally, because i am 16 hours away. had a blood vessel mistakenly cut during surgery, so have lost use of an arm and leg. life is hard, but I manage with little help. i am waiting for my ‘new body in Jesus kingdom. it was so long of a road, but i am doing ok…i guess. This is the day the Lord has made, i will rejoice in it………………………..

    • Nicole

      I am confused about why it asks for the website to post a reply here. So, I am going to test if my comment posts. First brain surgery December 2012, second July 2013. I had to be away from my dog too for a few months. Then, when he finally got to be with my, a month or so later, this recent Fall, he got sick, went downhill fast, and I had to put him to sleep 2 days before Christmas. I live alone, am a Christian like you, and can so feel your pain. I wish there was a way to contact you directly to give each other moral support. My dog was 12 almost 13, and he was like my kid and guardian angel. Said a prayer for you Callys mom.

  • Julie Grant

    I had a temporol lobe lobectomy done on the 12th december 2013 i have had low pressure headaches which have now cleared i still get headaches but i can deal with them i left hospital on xmas eve spent xmas day in my local hospital i couldnt stop being sick and this is the 3rd january and i am still feeling nausea and being sick with acid nobody has said wethet this is normal or not i had surgery for epilepsy and that it had become drug resistant my legs were like jelly like a seizure yesterday but my head was saying no it isnt i havent a clue wots going on and i cant get an answer from the doctors yet

    • Kim

      My son just had same operation 8 days ago…he vomitted continously for a week and also has terrible acid burn…we found having his pain meds changed helped and he stopped throwing up, he did not do well on narcotic meds at all…we also felt frustrated that Drs gave no answers…so we did the research ourselves. I think given time these things will subside especially when you can ease up on meds…hang in there…this too shall pass

  • Nicola Lennard

    I had a cancerous tumour removed 3wks ago.Well 95% of it and i start chemo and radiotherapy in 4wks time.
    I have just come across your 20 points and it is the first time i have laughed since surgery.
    I loved the pyjama comment.I am going through the endless washing of pyjamas.Who would have thought they would be so important.The steroids are the worst.I am also eating non stop and have no control over it.My face has swollen to twice the size and i look into the mirror wondering where i have gone.Shopping for big knickers had to be top of the list due to the 8pounds i have put on since starting the steroids.
    You are so right when you talk about the lack of energy and getting frustrated with yourself.Today has been the first day for me that i could have a bath that didnt take an hour.Talk about an exclusive club.Just one that none of us wants to be a member of.I wish everyone all the best and wish you all a future where you have all the happiness your hands and heart can hold.x

  • Thank you so much for posting this article! My wife had brain surgery to help with seizures 4 weeks ago and now that she can get on the internet again (for short bits at a time at least), she is always Googling to see if something she is feeling is normal. She found your article hilarious, but right on point with how she is feeling and it made her feel A LOT better and less paranoid about her recovery. Thanks again!!

    • Everywhereist

      I am so, so thrilled to hear that. Seriously. I was so crazy paranoid about certain things (I still am) and bothered by little differences – so I’m happy to help spare someone else that!

      • Sophie

        I just had a golfball size mengingioma removed Feb24,2014 this was by far the scariest thing I had to deal with. It started on jan 4,2014 typical headache that lasted a few days went to the ER where I was given a CT and MRI scan it came back as a mass growing in my right Frontal lobe. I was referred to a local neurosurgeon but I didn’t like his bed side manner I got a second option at a neuroscience institute where I met the best surgical team ever. Not only did your blog put me at ease but so did they. Now recovering is hard swelling moodiness. Does that go away? And how about taste buds huh everything has a weird taste. The pressure and the new hairstyle. I must say you are on the money with everything I prepared for it all just like you said. And honestly I don’t remember a thing just being asked who I would like to see and that the removed 100% non cancerous tumor I remember the cheering or maybe I was medicated whatever the case it was good news. They have found a smaller tumor but I guess we cross that road once I heal from this one. You are a true inspiration. Thank you

  • my wife just had brain surgery December 27th 2013 she had a brain bleed and it was an emergency surgery doc said the clot had pooled to the size of a prune I had only a small inkling of what to expect a friend of ourssent me this post on Facebook I read the 20 things to expect after brain surgery it was informative as were all the posts following some were scary some were encouraging this is her second day out of anesthesia she is responsive and talking some sentences make perfect sense while others get garbled and fade out then she frowns in frustration but she smiles a lot and can help herself to set up in bed the staff seems optimistic and says a long therapy will more than likely be involved at least now I will know kind of what to expect I thank God that He has given us this much of a start and continue to pray that He stays with her thru it all. May He also bless you in your recovery

  • Kyle Phelps

    Holy. Shit. You just read (and blew) my fucking mind. I had my brain surgery something like 3 years ago (I think… it still feels like it was only a few days ago). Only lately have I really felt like I have been able to move on from the event itself, but everything that you wrote in this blog post… I experienced it. And to be honest until reading this I’ve been finding it very difficult to remember enough things about the hospital stay and the surgery to allow myself to put the whole thing behind me. Thank you for posting this, I feel like I’ve gotten a chance to review the most traumatic experience of my life, instead of just trying to repress it. I always thought that I had the experience that I did because I reacted to the anesthesia badly or something, but you have given me an incredible gift today. Thank you. (Honestly, I’m surprised I haven’t come by this post before, given the countless hours I’ve spent up at night googling brain surgery experiences).

    • Eileen


      • michelle

        I also had two brain surgeries in early October 2013 . I had great support while i was in hospital and now i am out and luckily it was benign no family support. It feels like my head is pulling where the scar tissue is. i am grateful but still feel odd,

  • hannah

    This post is awesome it helped me to understand better how a friend probably feels with his surgery.
    you are such a brave and funny girl 🙂 so glad everything went well with your surgery and your friend !

  • lexi

    I had a brain tumor removed almost 4 months ago and this article has had such an impact on my recovery. I had been scared that everything I felt post-op was weird and strang but this made me feel so normal and made me realize there are other people feeling the same way! I read it all the time and find myself in tears by the end of it every time! I wish I found this sooner and I plan on showing it to anyone else going through anything similar!! THANK YOU!!!!!!!

  • Tina

    Hi ,

    I just found out I have a brain tumor ( not sure if cancerous yet ) and am scheduled for surgery in around a week or so. It is located in the front by my eyes and smelling nerves. Its totally surreal and is very scary . I think for me the recovery is what scares me the most and also just knowing that its brain surgery.
    I’m a cancer survivor so know about the friends who will run from you , but then the lovely people that are there in total support.
    I’m so thankful to read and laugh about what to expect ! I know everyones journey is different so thankful to read everyones and get some information from all the different people who have to go through this journey too.
    It is surreal and very scary , waiting to break down and cry but just haven’t done it yet. ????
    It’s the journey and how you handle it so i’m going to have faith in my neurosurgeon and the people who will be there to help me.
    Thanks for writing something with a little humor and being honest , I really appreciate it.

  • Billy

    Great and very accurate !! I had my tumor removed on Thankgiving 2011. I had expercienced severe headaches
    and loss of vision i kept thinking i had Migraines, Tension headaches you name it. When i finally couldnt take the pain
    I drove myself to the hospital and a tumor was discovered I had it removed the following morning. In a way I am glad i
    didnt have much time to think about the surgery. I hope anyone who has any symptoms of a tumor please get
    checked OUT immediatley i know if i had waited any longer i may not be writing this right now.I was walking after 1 month and no loss of memory accured just a few blank spots from the time before and after the surgery. I was back at work after 3 months. If I could do it all over again i think i may have taken a little longer resting but ive never been one to
    be at home and watching tv go old quick. Pain killers i used the first month but my advice is to not take them unless you
    really need them i became dependant on them and they were causing me headaches after i cut of the painkillers within a few days i felt my head starting to become pain free expect of course from the surgical location. I can relate to everthing you wrote and i hope more people read this and know that better days are ahead of us.

  • Maria

    This is great! Thanks so much for writing this! I had an awake craniotomy to remove a tumor in 2012 and thought everything in this was spot on :). Also really glad I wasn’t the only one who noticed the sensory changes! Definitely feel like I’ve had super-smelling and super-hearing abilities since my surgery

  • Dan

    I couldn’t agree more I just under went removal of a craniopharyngioma about 6 months ago, and you’re completely right. Mine was an emergency surgery due to some not too good doctors misdiagnosing my continual headaches as sinus issues (thank God, for residents and them having to study). I ended up going to the emergency room one evening and after hearing my complaints and noticing that my left eye had started bleeding he sent me for an MRI which ended up showing the tumor. I’m a 39 year old man and really happy to be able to say I’ll be hitting 40 this year. But yeah it isn’t an easy process and there are consequences that can arise from having your brain worked on, in my case I ended up with hypopitituarism, during the surgery they nicked or cut, (I’m not allowing them to reopen my skull to figure out which), my pituitary stalk, pretty much causing my whole endocrine system to stop producing hormones. Oh well c’est la vie, small price to pay to continue breathing says I. But all this said brain surgery IS survivable it’s just on you to decide how you want to make it.

  • Melissa Collins

    I had brain surgery the 3rd (January 3rd 2014)for an aggressive brain tumor (Gbm) and I have to say this is the most real blog about brain surgery that I have read thus far! I bounced back quickly and had very little pain! Now I don’t feel so strange that my head still gets that pressure and my poor scar, which is behind my ear on the right, is super sensitive! Not to mention that pull! I also have a blood clot in my face so I feel the slightest bit of pressure change. My head is a better meteorologist than the weather man haha I agree with the meds though! My seizure med make me slowed and my luck I took generic Keppra and broke out in that awesome rash they talk about haha but seriously this blog just makes me feel a tad bit normal that it’s not the meds or surgery making me feel like a sluggish mess haha man brain surgery is a butt head! Can I say the staple removal was the easiest bit Yet? Lol

  • milly

    this blog is really good,my son has just had brain surgery,he isn,t doing very well at the moment he is very frustrated with himself ,because he is a bit confused ,I have been out of my mind ,reading this blog has helped me because I didn,t think that this was a symton of the surgery ,Just hope he is more himself soon.

    thanks keep it up

  • Desirae Adams

    Thank you so much for sharing your story, and all the inspirational points to reassure anyone having neurosurgery. I had a craniotomy back in 2011 for hydracephalus, and due to the amount of pressure in my skull, my surgeon chose to drill a hole in my membrane and let the pressure naturally keep it open (rather than using a shunt). I ended up getting acute bacterial meningitis in my brain, which turned 1 noninvasive surgery, into 5, and a final invasive craniotomy; 3 months in and out of the ICU and home infusions, and a very long recovery. The last comment about your life making sense really hit home for me. When my surgeon came to tell me that I was finally out of the woods, I felt reborn, and have made it a point to treat my life as a gift.

    I was wondering if anyone knew of any other blogs or sites where people could connect about their experiences on the matter? I’m in my senior year of college to be an Industrial Designer, and I chose to focus my final project around brain surgery rehabilitation. I would love, and be honored to use others experiences to help shape my project (if you’re willing). I’m very emotionally attached to this topic, and would love to help those experiencing all the after effects of neurosurgery. Thank you

    • Everywhereist

      Desirae –

      Wow. Just wow. I can’t imagine how difficult things must have been – 5 surgeries?! I am so sorry to hear about everything you had to go through, and that you are doing so well now.

      Unfortunately, I haven’t found too many resources where people could connect (I was thinking of hiring someone and just building my own for the community, because there really should be something). If you are looking for additional blogs about brain surgery, GreyMatterLife is pretty great.

      • Frenchfries

        Hi, I had brain surgery almost three years ago, and I am still struggling with physical, emotional, and cognitive problems. I too think that there should be “something” for the community of brain surgery/TBI etc. My husband designed websites and has the resources to put something together. I would love to talk with you and see if this could go anywhere. I think it is really needed.

    • Analie Cangco

      =) pm me @ my FB.. Analie C. Cangco, I would like also to hear from you! Had my tumor removed last March 5, 2013 & brain shunt fitted last August 7, 2013. As I read this blog it reminded me all the experiences I had, so true because I experience them all! Brain surgeries after u learn to appreciate life more even to the very little things. I’m 28, and still single dreaming for more to life.

      • Desirae

        Thank you so much for the replies 🙂 Sorry for such a late response; I’m just finishing up my senior project where I designed a therapeutic device for hypersensitivity to light and sound. I incorporated color therapy and sound therapy with tinted lens inserts and active noise cancellation ear buds.

        I remember my extreme sensitivity to light and sound, especially while I was battling meningitis.

  • Analie Cangco

    =) my right ear keeps on ringing, as in non-stop since I had this brain tumor removed last march 2013. They had an incision at the back of my right ear, is it for life? Everything listed above was exactly I’ve experienced! At my first surgery, I am fully aware and ready that’s why it is an overwhelming experience. My last surgery is when they have to fit my brain shunt, it’s an emergency and I am not aware of it. Waking up in the hospital is a bit scary experience! I’ve lost my memory on the month of July 2013 till my last surgery August 2013. Hydrocephalus journey experience is a lot scary thing! Pyrexia, as I sweat all over that I have to change my wet clothes after taking paracetamol ( I think 3-5x).. Bladder control/ Urinary urgency or have to urinate in a hourly basis that really disturb me to sleep well at night.. . Loss of appetite (muscle wasting, clothes gone all loosed).. . Blurring of vision.. . Cognitive problems ( delayed/memory loss, etc.) .. It cost me lots of money on buying diapers! Poor gait to not walking.. . Thank God, shunt turn to be good and everything goes well! As I am grateful for the bladder control, and I can walk! Still working on my balance but hopefully it will recover the soonest at its best! Hoping.. .

  • Analie Cangco

    =) I want to read about their brain shunt experiences.. Anyone here?

  • Macy Lee

    oh my goodness. ive stayed up late tonight reading this, because i have a scheduled mri tomorrow morning on my brain. i had a benign brain tumor (stage 1) that my neurologist said that i couldve possibly had sense birth. i was TERRIFIED. the surgery took 9 hours and the tumor was the size and shape of a small squash. i had my surgery 3 months ago and im still working on getting back to my normal self. it was a hard thing to embrace becaused im 15 years old, a sophomore in high school… and it was something that i never thought would happen to me. i was so scared of them having to shave my head. turns out, they left soo much hair> idk how they kept it out of their way!!! i was so proud. and yes , i woke up EXTREMELY thirsty and my throat was very soar. i felt loopy and couldnt hardly stand up without my mom holding my arm and hand. my surgery was exactly september 10, 2013. the roughest, bravest, and most important day of my life. thankyou so much for posting this. now i have someone to relate to. my parents have no idea what it was like lol once again…THANKYOU! mri si tomorrow. sending up prayers that there will be no regrowth.

  • This post has really help!!!! My aunt had brain surgery 11/5/13 and I have been taking care of her since. There have been times when I thought I was losing my mind. The doctors NEVER prepared us for what her recovery would be like. It is now 1/27/14 and we have just begun leaving her by herself again. However, I’m still not completely comfortable with leaving her. She has always been an extremely independent person surviving a stroke and heart attach 26 years ago when her youngest son was born and leaving her legally blind. She has raised her sons and lived on her own until this surgery and desperately wants to live on her own again. I’m at a loss as to how to handle the temperament that she has now. One minute she is angry and wants us to leave her alone and just yesterday she cried and said she wants to come and live with me for awhile. We’ve found no support groups and any advise that you could give to a family member trying to help her through this would be much appreciated!!!!

  • milly

    All these comments are spot on why does no one at the hospital surgens or nurses tell you what to expect after brain tumor surgery Iam so glad l found this blog site l am finding it so reassuring to know that other people have had or got the same things happening to them and that they are talking about it .and that things . get back to normal or as normal as they can be .

  • Suzanne


    I had a benign brain tumor (Meningiomas) removed Sept 2008 . I experienced everything that has been written.
    Reading this has brought tears. I experienced systems for years before I had a seizure and it was discovered.
    After surgery you will still get headaches for a short time (different types of headaches) and need painkillers but your brain is just adjusting and this will settle down.
    It takes years to recover but you do. I am have a supportive husband and grown children, I work part-time and study.
    Anything is possible but give it time. After five years I still get tired and enjoy naps. Sleep is when your brain heals.
    Thanks for saying the yearly MRI check up are stressful, I now know I am normal.

    • Analie Cangco

      =) mine is vestibular Schwannoma totally removed last March 5, 2013. It is benign also. I must say that month of January is stiffed neck days.. This month of February seems the headaches months but I didnot suffer on it last night.. Hoping it was only the effect of wisdom tooth growing. What else to expect from ur experience?

    • Eileen

      Yes, I too had lots of symptoms that I just ignored over the years. I just chalked them up to getting older or the various medications I was taking for high cholesterol, high blood pressure and pre-diabetes. . .then the last few years it got worse with balance issues, dizziness, anger outbursts (for no reason) and even depression. This all came “to a head” (no pun, intended) when I had a grand mal seizure (never had any seizures before) and a meningioma tumor was discovered and then 95% removed two weeks after that discovery. Surgeon said it could have been growing for 15 years, or so! After another MRI a month ago (6 months after original brain surgery) I am now scheduled for stereotactic radiation (if necessary) to go after the 5% remaining behind my right eye. That is yet to be determined, but will find out next week. I guess I will need MRI updates for the rest of my life. I’ll accept that and hope for the best each time.

  • Kim

    My dad had a non cancerous brain tumor removed on November 13th, I remember walking down the hall to go see him after the surgery and the NeuroSurgeon saying to my family I did not think this would happen so I did not mention it those words will forever be engraved in my brain anyways the Dr said that when he was removing the tumor and moved the Supplementary Motor Area strip SMA Syndrome and that made dad loose all mobility in the right side of his body and the ability to talk we knew dad was going to be Pissed and frustrated and he was he was even crying the Dr’s reassured us that this was not a permanent side effect that he would regain all mobility back with in 3-5 days well to make a long story short he ended up getting ventriculitus with Entrobacter Infection in the brain many complications and 2 months later is in a Rehab Hospital No one has ever since this happen so they can not give us any timeframe if any of recovery and now the insurance company wants to kick him out to go to a nursing home well we are middle class citizens so yes insurance will only pay for 30 days and we don’t know what to do. Any suggestions or has anyone ever heard of this Thanks

  • Analie Cangco

    =) my incision at the back of my right ear… Is there someone out there experiencing ringing of the ear at the incision site? There is also a pulling feeling where the scar tissue located when the weather is cold.

    • Anna

      I don’t hear a ringing, but the incision site is super sensitive ten years later. When I lean my head forward or back I feel pain. It’s a constant reminder of what I survived.

      • Analie Cangco

        =) ty Anna 4 d reply! I’m hearing this humming sound at my ryt ear since my vp shunt fitted last August 2013. Every little changes makes me feel so afraid or paranoid. I agree with the high sensitivity feeling of the head, as I am experiencing it as if it was real fragile indeed. A real grateful feeling to survive 2 brain surgeries!

  • Anna

    Thank You for your article! I came across it bc I’ve had a desire to shave my head completely after having (2) successful brain surgeries ten years ago. I was told my head would be shaved for the second surgery so I had bought a wig. I was strangely disappointed that they only shaved the back of my head ( I felt gipped). I recovered in a few months and am incredibly grateful to be alive. I just can’t understand this desire to shave my head… I wonder if it has to do with unprocessed grief over the experience.

  • Anna

    Thank You for your article! I came across it bc I’ve had a desire to shave my head completely after having (2) successful brain surgeries ten years ago. I was told my head would be shaved for the second surgery so I had bought a wig. I was strangely disappointed that they only shaved the back of my head ( I felt gipped). I recovered in a few months and am incredibly grateful to be alive. I just can’t understand this desire to shave my head… I wonder if it has to do with unprocessed grief over the experience.

    Looking back on the experience I wish I hadnt been so brave and strong. I wish I had let myself fall to pieces. I wish I had worried less about how everyone else was feeling about my brain surgery and more about how I was feeling… I was terrified that I would die, but the fear of being vulnerable preventer me from expressing what I was truly going through. I’m grateful to be brave to express what my true experience was.

    After writing this I am feeling a surge of nerves flowing through out my face chest and body… Surreal

    • Everywhereist

      Ha! No, I totally hear you – I was kind of excited to think that I was going to rock a half-shaved head (and a little disappointed that they barely cut any of it off!) Maybe it’s because we’ve always secretly wanted to do it? 🙂

      • Owlpaca

        I too was surprised, although I lost a lot after wards because they pealed my scalp back to do the surgery. My gals at work were talking about shaving their heads like mine and were quite relieved when they found out I still had hair! LOL

  • Mandy

    First brain surgery 23 August 2013, followed by two more brain surgeries in Sept & Nov. my scans are now clear thank god! I wish I’d found your blog before today. After reading it I don’t feel so weird or unusual. I’m still learning to give myself time to heal & have to stop myself getting cranky with myself for getting so fatigued. Giving myself permission to do nothing has been the hardest thing. Thank you all for sharing your stories.

    • Analie Cangco

      =) I agree with the feeling of the usual work you do, and you can no longer do the ways things before is the most miserable feeling. Nah.. Less energy and always sleepy! I’m still confuse if it still normal accompanying the on and off headache, feeling different, and frequency urination! I do have vp shunt as well. I’m watching out for fever. My MRI schedule due to an early month of April. Do you think I can do it earlier? The feeling is paranoid having this shunt malfunction

      • Ac10.8

        its normal to still have headaches. i had my brain tumor removed 10/8/13 & still qet headaches. they say its cuz yr brain is still healinq. needs time & alot of sleep. i still have an mri every 3 months to make sure everythinq is ok & i will b doinq this the rest of my life..im 20. :/ dnt miss any appointments & if the headaches jus qet worse before yr mri jus qp qet checked out. its ok to b worried.

  • Analie Cangco

    =) I’m not lying flat on bed, I always put two pillows on. Dizzy feeling whenever I’m changing positions. Light-headiness can be prevented sitting upright in changing position.

  • Cammie

    I had brain surgery on feb 7, 2014. My opthomologist ordered MRI after I failed several eye tests but had nothing structurally wrong with my eye. Frequency and duration of headaches was increasing. My MRI showed significantly large menigioma in a ” critical area of brain”. My Neuro surgeon said I will need a craniotomy and three weeks later the gamma knife with slight possibility of another craniotomy. He said the surgery would last 8-16 hours. In ICU the next day I found out it lasted 9 1/2 hours. My brother said I was hilarious as they rolled me in ICU I made a Shaka with my hand and garbled some form of greeting. I feel bad because I remember having an extremely sore/ dry throat and drove the nurse nuts asking for ice. When I finally got ice and was allowed to drink I choked on the water, OMG. Never planned for having to cough after brain surgery. I kept asking nurse how I could splint my head. That brought new meaning to splitting headache. My brother said he was amazed that I was talking to neurosurgeon after my surgery. Knowing me I was making dry jokes and asking how my scar looked. Shark bite who haha. I remember waking up to my Dr voice he said he was very pleased with my post MRI. Yeah I asked if that meant I still needed the gamma knife and to my disappointment he said yes. I’ve basically weaned myself off the heavy pain killers. I still have headaches but nit like the first week. I was extremely sensitive to sound nd lights. Note to people around post brain surgery patients. You don’t have to talk loud, turn lights on or knock loud. Hello my head is splitting!! I stayed in hospital 4 days. I didn’t really have an appetite for food, lots of nausea. I had mostly jello and jook ( rice porridge). I want to go back to the way things were. I know I have to be patient with myself. I tried to drive a mile to grocery store two weeks after surgery. Not smart i got nauseated and dizzy. I was pleased that I didn’t make a scene by passing out. I still can’t believe it’s over. Well the first part. I can’t wait to get on a normal sleep schedule. I’m exhausted constantly but never can sleep at night. Oh I still have vision problem in right eye, but was pleased to find out I didn’t lose sense of smell. :)) thanks everyone for sharing experience.

    • Owlpaca

      In the hospital I was so sensitive to light and noise that all phones and TV were shut off and lights dimmed. Two years later loud voices still bother me at times. But it is good to be here!

  • Owlpaca

    In April of 2012 my hero and neurosurgeon, Dr. Stiner, removed 2 of my 4 tumors. Mine were in my bones with one on the top right of my skull and the 2nd in my eye socket. He removed my eye socket (had a second Dr. holding my eye) and replaced it and the top of my skull with titanium. He said it was like an erector set in surgery! We found my tumor because one eye wasn’t playing well with the other when I did turns/spins dancing. They were calling me bug eye or pug face before surgery…made me laugh…thank god for friends that can do that when all you feel like doing is cry. Thankfully they were benign meningiomas so we are now watching the other 2. Since they cut thru my facial muscles in order to pull my face down to remove my tumors…I could not chew after surgery…LOL…not even a Cheerio. I can eat almost anything now and have no paralysis in my face, a real miracle. AND I can see out of both of my eyes! The right side of my head has no feeling but the silver lining is that, Heh, I can hit my head and feel no pain! I was in the hospital 5 days and back to work PT in 3 months. I really feel that my physical condition before surgery helped my recovery. My main issue 2 years later is the vibrations I feel in my head…wish they would go away. I am glad to find this blog …

    • Owlpaca

      Two things I would add to your 20 things:
      Red Ants; when my nerve endings started to fire up, my head felt like I had 100 red ants biting it. Rubbing or message helped it even though I did not want anything touching my head.
      Squirrel; sometimes I feel like someone just yelled “SQUIRREL”…call me a space cadet…my husband says I focus on one thing and then he has to re-direct me.

      After surgery, I had such good care … it was almost too much…took me awhile to use my brain for thinking again…did not want to make even the smallest decisions. I was bored and really tired of watching news…I really wanted to go back to work…thank goodness they wanted me back!

  • Ac10.8

    Great post! i had a tumor removed 10/8/13. surqery went well & i was able to qo home 2 days later. now its been 5 months & my scar still hurts. i qet headaches everyday & my pain meds wear off after an hr.. i hope this starts to qo away bc havin headaches everyday all day is becominq a pain in the ass 🙁

    • It will go away…it took months before all the regular pain stopped and eventually, like maybe even a year later, I got the feeling back in the rest of my skull. My surgery was in 06. I still get a different sort of headache that I think has to do with the metal in there, it’s like a bone ache in my head. Most of the time it coincides with weather changes. But it’s minor. At about a year after all the most difficult parts had settled. Hang in there, and keep a positive spirit.

  • Ardeina Kelley

    I had brain surgery in 1987 resulting in a clipped aneurysm. I have been unable to get back to my pre-surgery weight. I have tried every thing to no avail. I am looking for an easy way to loose the weight without causing harm to my body. When I try to diet strictly I get headaches. If anyone has any suggestions please post them and let me know

    • michelle

      Its better not to diet, one idea is to give up or cut down on wheat and gluten products if your doctor agrees and read a book called the zone, you eat smaller portions and loose weight naturally. Drink lots of water and coconut water is very good for hydrating the brain.

  • Alex

    Thanks for sharing your thoughts and experience. It breaks my heart cause my mom will have her brain surgery tomorrow. Hope she can overcome all her fears. Her love ones is praying and hopping that after her surgery she will be fine.

    God is Good.


  • wanda

    Hi my name is Wanda, 4 years ago I had an bleed to the brain, a ruptured anurism, that almost most took my life. I was 30 and it horrible, the recovery worse but today I am much better and thankful for being here. Can I just say that the 20 expected in this count down are so true, I was laughing because As I read I could remember myself doing all these especially the speaking different languages I would speak Spanish to the doctors lol jajja omg but thank u I needed this for real

  • Ron

    Thank You for posting this list. My wife of nearly 40 years recently had a baseball size tumor removed from her right frontal lobe. A GBM. They got 90% of it and we are waiting for swelling and a fluid leakage from that area to stop so we can start chemo and radiation. I am having a hard time Not panicking. articles like yours help by providing information so I don’t feel all alone. She has been amazing on recovering from the surgery and has no deficits except the loss of her vision. 90%. but the Oncologist feels it may come back. I’m just glad she is still alive.

  • Melinda dabbenigno

    Great blog and look at the feedback .I went through surgery 5 years ago to remove a posterior fossa meningioma .I also had swrlling of the brain so underwent 2 surgeries.I am gratefull that i have another chance and really appreciate life .The expetience had made me a stronger person .I try and suppory othets who are going through brain surgery .A friend of mine had a facebook page to suppport each other .Aunty Ms brain tumor support.She had also written a book .Check it out .You are not alon and never give up hope . Melinda x

  • Terri

    This blog has been the best help on the internet. My 21 year old daughter had a pilocytic astrocytoma grade 1, found co-incidentally after a car crash MRI. She has 8 hour surgery to remove and had double vision and weak on her left side which is after four months starting to get back to normal. The main thing is her energy levels are still vey low and I hope they return to normal in due course. Your blog was just so helpful and true to life and it helped immensly.

    Brain surgery changes you for ever but makes you stronger and able to enjoy life for what it is, but the heartache you go though is undescribable before, during and after, I look forward to the year mark so we can get a good idea of how far she will be with her tiredness and vision.

    Thank you for all you stories, they certainly help.

  • Salman

    I had 5.1 cm x 3 cm frontal lobe tumor removed 4 days ago, I am back in my self and trying to gather stings of my life where I left them . It’s not just tumor that has been removed but also the fear of unknown and uncertainty of what ifs . The tumor was benign and I am glad I took a design to go under the knife and now can look and think of better things. Yes there was pain, discomfort but I was meant to pass through it to get to the other side.

  • Brendan

    So I had a dermoid cyst removed from my temple last month and I cannot even begin to tell you how accurate your information truly is. I really appreciate the fact that you shared this information because I was worried I was going insane for a bit. I’m a twenty four year old male and I only found out I had a tumor 2 months ago when I had a seizure and was found on my living room floor with blood coming out of my mouth. I woke up in the hospital and was informed after performing a CAT scan that a benign tumor was found next to my temple behind my eye on my right side. My surgery took 6 hours and I am almost 2 months out now and the headaches are still a pain in the @$$. Especially when I’m trying to do chemistry. I have to always be patient with myself and remember this isn’t like my usually hangover recovery it takes time. Also not drinking is kind of a pain but I decided since my brain is in a fragile state coating it in alcohol is probably a bad idea. I will keep posting as I continue to navigate my way through this, but once again thank you because nobody knows anything about this except for us who have experienced it so you have done a wonderful service helping me to know I’m not nucking futs

  • Thanks for writing this. It’s a great thing to have for those who will be going through such a process. I had my brain surgery in 2006 and I can tell you some of the things mentioned are still with me. My scar can still run chills down my spine, but it’s something my wife has a skill of using to her advantage…in a good way. As for lasting effects I sometimes get bone aches in my head which I think has to do with the metal plates in there and the different rates of change with the weather that happens with bone vs titanium.

    It’s important to know what part of the brain they may touch or cut into, and to know what it controls. Nobody prepped me for this when I went in, but when I was in the IcU for recovery I started to notice that I couldn’t read, and I didn’t have right side parapheral vision, my memories were a bit mixed up and hard to come by, and I had a hard time finding some of the simpler words for things. They had cut into the language center of my brain, and when I told the about it they said “actually, we are really impressed you can talk!” So…that’s a possibility.

    Took about three weeks before everything was back. It took a very, very long time before the nerves in the area of my scull had feeling again. For a while I thought I might just have part of my head with no feeling forever.

    I am an entertainer and I now perform a mentalism show, during which I talk a lot about my brain surgery. I didn’t have cancer, I had seizures brought on by a malformation that had hemoridgedl.

    Best of luck to all going through this.

    Please keep a sense of humor and a light heart. These and love are the best tools for recovery!
    All my best,
    Stuart Palm

    • Diana

      When you were going through recovery, did you ever feel like you needed space from your significant other? I know your married so it’s a little bit different. My boyfriend had seizures and they removed part of right temporal. At first it was like he was himself, now about a month after surgery he is saying he is unsure about us, and needs time and space but that he misses me. Just wondering if you kinda felt like you had that uncertainty at one point or have an idea as to what’s maybe going on. This isn’t like him, as we were very much inlove before surgery.

  • mattj

    Just re-reading this 4 hrs before they come for me. Makes me smile every time. Thank you.

  • Amanda Alexander

    One of the most helpful blogs/bits of information I’ve found online. My dad had a benign tumour (left temporal lobe) removed yesterday (took about 5 hours to remove) He’d had it (or known about it) for a year or two but hadn’t affected him massively until about 6 weeks ago when swelling around the tumour left him weak down the left side, eventually unable to walk, confused, hallucinating etc….just seen him this morning and i’d taken his favourite mineral water…he drank half a bottle whilst i stood there in about 30 minutes. His thirst was insatiable. He was happy, voice strong but confused but only 18 hours since the op. I wasn’t sure about what the next weeks, months, years would hold but realise we are just going to have to wait and see and help and support him and make him realise Rome wasn’t built in a day. So helpful to hear of what he might experience so i can help. Thank you…all of you for the helpful comments too.

    • michelle

      I had an hemangioblastoma that was benign removed October 2013 with two long operations. It took me 6 weeks to get off of all the medications and 6 weeks to complete physio. everyone is different. Give him lots of love and kindness, lots of water to drink and patience. Its a big shock to go through this and we are all different.

  • I was diagnosed with Superior Canal Dehiscence in both ears in the November 2012. That was after 5 months of testing and trying drugs to weed out the symptoms that look like other diagnoses. In laymans terms I have holes in my head or rather in the bone that supports the brain at the top of the superior canal. These holes allow sound to travel to the brain allowing me the pleasure of hearing my eyes move in my head, every creak and crack of my joints, the sound of my voice amplified in my head, and the steady beat of my heart drumming in my brain. I would confuse the sound of my heart beating for someone knocking on the front door and would answer it to find no one there. Sounds cause tinnitus, brain fog, effecting my speech, memory, and inducing vertigo. I feel like I’ve been spun around and then told to walk a straight line and solve a math problem while reciting the Gettysburg Address. OVERLOAD! My brain was being told by my balance system that I was moving when I wasn’t and my eyes would try to follow the movement. Talk about a confused brain and all because of a little hole.

    I’ve undergone 2 Superior Canal Dehiscence surgeries this past year. The first one was in February 9, 2013 on my right ear and the second surgery was on the left ear on December 9, 2013. Each involved drilling through the mastoid to reach the superior canal to plug the hole that was/is present in the bone that supports the brain. the right side tested as the worse of the two so that is why that side was done first. The doctor was hoping this would stop my symptoms, but unfortunately they continued and with more testing and symptomatic problems we decide to go ahead with the second surgery.

    I’m 3 plus months out from surgery and still continue to have the same symptoms prior to surgery. I felt like the last surgery worked at least that what I thought when I visited the surgeon for my follow up 2 weeks after surgery. The sounds had stopped. I was so overwhelmed with emotion I got a bit verklempt at the surgeon’s office. But since that time as I healed and the swelling has gone down and the sounds are back.

    I’ve been trying to keep positive attitude through all of this. But as the days continue with symptoms that continue to overwhelm me keeping me from doing some of the basic daily activities and limiting me to my home. I decided to reach out to the internet once again to find some answers or at least someone else who have had my experiences. I’m so happy to come across this blog. I feel it is so hard to really communicate what is happening in my body and brain to my friends, family, and partner.

    It was good to read this blog and remember that it takes time to heal and to feel normal again. I appreciate the humor in the writing of this posting. If anything I do have back is my quirky sense of humor or at least most of it. I can look at my mess of a kitchen as I’m writing this and be say “Its ok, my A type personality is just taking a break from the world and the dishes and dirt aren’t going anywhere.”

    It’s good to remember to give ourselves a break and not be so hard on ourselves. Time will heal along with laughter and love.

    Thank you for sharing your story and experiences.

    • Eileen

      Keep you spirits up Alejandro. Though, your situation is not the normal (quite unusual diagnoses) compared to most of the brain surgeries, I just want you to know that positive thinking is the way to go and you are in good company with many others on this website. Keeps me grounded to check back once in a while. Time passing. . .will help you.

  • Rochelle

    So glad I found this and others that have left replys. It’s been four months (Nov 13) since my surgery. (I was 29) I had a benign (thank God) capillary hemagioblastoma removed from the posterior fossa. After four months the back of my head will still hurt, feel weird or numb, headaches but not like before surgery, occasional weakness or I know it’s not up to par in my left arm and leg, and my energy is still not were it used to be. Can I say it’s easy to cry or emotional? I’m back to work doing MRIs (that’s my job) hello? Facing what I had been faced with. But overall , after having my brain exposed, I think I’m doing great. With Gods mercy and healing I am so thankful, miracles and wonderful testimonies we are. After surgery while recovering I know I called the nurse several times. I said, “I don’t know anyone to compare symptoms with. It’s not like talking about just having a baby” lol. So, after reading this blog and comments, I’m going to stop giving myself such a hard time about everything.

    • michelle

      WOW I also had an hemangioblastoma and I am so happy to find someone else who has had the same thing Rochelle. i mean not happy that I am sharing this, but happy to share. I had mine removed in october 2013. I have recovered well and am grateful. I have a numb head still and a dent there and one at the top of my head. When its cold and rainy my head aches. Mostly I feel grateful. I all do not feel 100 percent back to how I was before. I have also given myself a hard time about everything. Thats amazing that you actually run MRI’S for others!!! I send you al of my best wishes and also feel that I am grateful for my prayers and other people. i now wish everyone on this blog the miracles that we both share.xx

      • Patrice

        I was so happy to read this….. Immediately saw Haemangeblastoma and felt relieved, some others to relate to!!!
        I had my Haemangeblastoma removed in August 2013. Still feeling the effects unfortunately – dizzy spells, headaches, confusion. Recently had MRI and all is clear ( thank god) .
        Up until reading this site I had been punishing myself for not being back to ‘ normal’ by now.
        I’m not yet back to work and really unsure at what stage I will be ( i work as a counsellor) , this in itself worries me, especially when I explain to family that sitting down with clients, listening to their issues actually hurts my head right now!! Nobody truly understands unless you have been through it.
        As my doctor always tells me ‘ Brain surgery is MAJOR surgery and the brain needs to heal’ .

        Is anyone else here 9 months post op still feeling like this? Would love to hear from others on this!

        This is a fantastic blog aswel, I came here back in August as the Internet has absolutely NOTHING to offer re Brain surgery, which is disappointing!!!!

        • Everywhereist

          I’m so happy the blog post was helpful to you! I had the exact same experience, BTW – found that the internet had very little to offer in terms of what to expect, so I just went ahead and wrote the post that I wish I could have read before my surgery.

        • michelle

          Thank you so much for creating this blog, its so important and helpful. I just had my 6 month follow up. I have pain in my shoulder and neck. Do you have this also Patrice? I am doing as much yoga as i can. I have been pushing myself to get back to work and make up for the past year (i am a self employed artist). I have to remind myself also that it was a major thing. Still feel like I am recovering. Every time i tell someone now that I had a brain tumour, they go a bit silent and then I think i had better keep this quiet in case I am judged!

        • Stu F.

          I had a Hemangioblastoma removed from my Cerebellum in October 2014. I generally feel good & have had no pain/dizziness since the surgery…itching at the incision site is quite another story! Been back to work since December….went right back to full time. Probably shouldn’t have done that! Fatigue is an issue. And my job is extremely stressful. I’m in the process of looking for a new position. Off all meds. Have occasional slight headaches from time to time. Found this while home recovering & reading everyone’s experiences has helped me tremendously in dealing with my new reality. Amazing how true the “20 things” really are! I joke a lot about my situation which has helped me cope….Amazing thing is that people think I don’t understand how serious my situation was/is…I “gently” remind them that was MY head cut open! Naming the tumor also helped. Thanks to my sister & niece the very strange name (Umacious Mucklefutz Sushi)helped me get ready for surgery. Have my 1st MRI in Feb…a little nervous but am ready for whatever it shows as this is now my life which I will continue to live! I hope everyone’s recovery is strong and no one beats themselves up for something they can’t control!

      • Patrice

        Hi Michelle, yes I do have pain in my neck/ shoulders and have recently noticed dizziness , slight nausea when hold my head back/ bending down , sometimes even when lying down in bed. Went to the doc and she reckons its Vertigo, I’m just hoping it passes soon.
        Is Yoga/ Pilates good for relaxing the brain? I don’t have anyone nearby I can pester with my questions in regards to the whole brain surgery thing! my email is p_mcd85@hotmail.com if you fancy comparing notes 😉

        • Hello,
          I will email you. By the way. I am now 9 months post op!

  • Diane

    I am so glad I found this! It has been three months for me now. I had no idea what I was signing my self up for. Although it was necessary. I have not had much patience with myself and have had some very frustrating days. I keep wondering are these things normal to experience? Well now I see that others have had the same problems and I don’t feel so alone. I agree with the person prior to me ‘Thank you for sharing your story and experiences’.

  • Cherry

    Wow I’m amazed I never found this site before. I have two friends who have just had brain tumors removed and was looking for some information (for them) on what to expect after the op. Considering I had a brain explosion, as I call it (nearly died from a burst brain aneurysm) and brain surgery that saved my life .3yrs ago I was trying to write something down for them about what to expect but I’m not good with words, and my mind still goes it’s own way or forgets what I’m talking about still, that I decided to try and find something online and came across this.
    I think you’re amazing and I give thanks for you and everyone else (like us) who have lived thru such hardship (and more so for our families who live thru it with us). What doesn’t kill us makes us stronger!!!

  • Kat

    Hey everyone! I’ve been reading through everyone’s posts and it’s incredible what you have all been through. My mom had SAH at the end of January. She had a 10% chance to live. Today she is in rehab doing well with physical and occupational therapy! I am so grateful that she is alive and progressing as well as she has been. Her short term memory seems to be improving slowly but surely. She is, however, still confused.
    I know everyone is different, I am just curious if anyone else has had or know anyone that has had SAH and how long it took the confusion to go away?

    Thank you everyone and thank you for writing this blog!

  • Thanks for this. I found it very relevant.

    My surgery was about 9 months ago, and at times I’m convinced that my life has only gotten worse since. All this, despite the fact that
    1) my surgery was done endoscopically
    2) I’m 23

    My family said I was obnoxious once they put me on the drugs. 🙂

  • Dianna

    Hello, just recently my boyfriend went through a traumatic brain surgery as well. It’s been about 20 days. Did it ever affect your relationship with your significant other? I’m trying not to take offense when he said he wants space. The weird thing is, the first week after surgery he wAnted me around as much as possible and although he was in pain he seemed like himself. Now he apparently wants space to be alone for a bit, from me and other people. He also is very moody towards me and his mood swings change ridiculously. Any ideas? I understand it could be the meds but just wondering if it affected you and your significant other?

    • Everywhereist

      Sounds like it could be meds, depression, or just the difficulty of the situation, which might now be hitting him. Wishing you both luck, and hope you can get through it.

      • Diana

        Hello, he’s not saying he is unsure what’s going to happen with us, could this be the meds/depression? Because he went from before the surgery saying I’m the love of his life. Even when I saw him in icu he said he loved me and we cuddled and such. He hasn’t really seen friends in a while either. I’m concerned but he said he wants his space and time right now and to bare with him. He says he misses me but needs space. How should I take this? It’s been a month

    • Sabina

      Wow Diana have patience with yourself and him. Do you have any children in the picture? Because if you do it can be a bit all too much for him, too busy, too loud. Small steps and a quiet surroundings will help him in his recovery.

  • Jade

    This was so informative and sweet I am very thankful. My friend has surgery two days ago and we are still not allowed to visit. I wanted to know what to expect so that I can be as supportive as possible. She is a wonderful person and I want to be a joy to have around.

  • PML

    I have a friend who just had brain surgery two days ago to remove a blood clot. However, she came out of the surgery unable to breathe on her own and no one knows why.

  • Leslie

    I’m delighted I found your blog for the 1st time today – as I”m heading to Oslo in a few months and that led me to you! I had a sub-occipital craniotomy on June 21/13. All of which you said is absolutely correct – all of it! You had me laughing so hard. Yeah, I was expecting to be back to work in a week – I’m a strong woman – hah!!! Oh, and I learned it wasn’t a great idea to try and mow my lawn 10 days post-op. I though I was fine…obviously I wasn’t. And that landscaping tie will never be the same, still only paid $130 to repair the damn machine – which I picked up yesterday. I will keep looking for your blogs. Need a laugh. And to anyone who is going in or just getting over it I agree 100% – be patient with yourself, even if they tell you it could be a year or more before all the numbness and tingling goes away – believe them. I didn’t before, but I sure do now.

    The upside, going to the dentist this year has been a breeze…no Sandy, no freezing 1/2 my face is already numb!

    Take care, Leslie

  • Toni

    My Right Wing Meningioma was removed January 29th, 2014. Well at least most of it.

    So its been almost 3 months and I had to re-read your “Things to Expect” because I do get frustrated with myself, not to mention my kids get frustrated with me as well. I really would like my life back. Does anyone find it difficult dealing with state disability? My neurosurgeon states the symptoms are not related to my tumor even though all symptoms prior to diagnosis are exactly what the medical journals state go along with this kind of tumor. I was relieved (somewhat) once I received the diagnosis, it explained what I was going through and gave me a solution. The neurosurgeons have me seeing psychiatry for the symptoms.

    Super power senses! Sometimes this can be a good thing. The doctors had to “Roto Rooter” my sinuses due to the tumor adhering to my sinus cavity. That was a really bizarre feeling! One side of my sinuses were extremely clear and my heightened sense of smell is still ridiculous. My kids can’t smell things but I can. Its great when its apple pie but other smells aren’t so pleasant.
    I lost feeling in the right side of my face and its starting to come back slowly. I researched it and it appears the trigeminal nerve was effected. Now when I touch certain areas it feels as though a million needles are poking my face. Also if I tough in just the right spot under my eye my upper lip has a weird sensation. I am thankful I did not lose movement in my face, except for my mouth. I can only open my mouth on the right side a little bit. Makes for a fun time trying to eat food and much amusement for my son. On a daily basis I feel the nerve endings firing in my skull and face approximately 40 times a day. Bizarre feeling but I know its a sign of healing.

    The ability to focus, retain memory and be nice to people have been the most difficult for me. I’m always the lady in the line chatting it up with everyone. The tumor totally changed my personality. I am trying to focus on being nice to people as I have always been a very caring person to everyone.
    Oh The Struggle!

    Thank you for posting what to expect. It did help me and I passed it along to family so they weren’t surprised and they could prepare as well.

    Member of The Tumor Team,

  • david

    hi, my name is David.
    this friday the 15th of april i am getting my cavernoma removed from my right temporal lobe.
    i am 35, luckly my parents came from italy for a month 2 months…i think ill desperatly ned their help.
    does anybody here got a cavernoma removed? tomorrow ill have my pre op. meeting, i am a bit nrevous!

  • Kathy

    It’s 2 years since I had 2 operations which were 30 days apart. Both were brain bleeds. I was very fortunate with my recovery.. I always say now that I have the”nose of a beagle dog” since ny surgery and am glad to know I am not the only one. I have issues but am glad I am so well. Had a great hubby help me recover.
    Good luck to all here!!!

  • Barbara Stoffa

    What a dazzling website. The Twenty Things…was comprehensive, funny, but most valuable of all—direct. I hate it when doctors say, “This will be a little uncomfortable.” I could kick them in the shins.
    On May 15 my husband, 74 years old and a Parkinson’s patient, is going to have DBS, deep brain stimulation surgery. It sounds like science fiction and is somewhat.
    Holes drilled in the skull then a probe inserted deep, deep into the brain. Six days later he goes back to the hospital and the doctor inserts a pacemaker and connects it to the probe? brain? I hardly know what.
    So far we have gotten zilch from the surgeon about post op care and I just started doing my own research.
    What luck to land here for my first read. Thank you so much. I don’t know how different DBS might be, but at least we have a starting point.
    (But Phinneas Gage? I thought I was the only one in the world who would know that name.)

  • Antoinette

    I had two ruptured one unruptured aneurysms December 2011, crainiotomy, coiling and clipping. Oh and left side stroke.

    Wish I had access to a site like this at the time as I was so confused and thought my life was over. I’m a lot better now and wish all who have had surgery a great recovery. We,’re the blessed ones xx

  • Christine

    I was just discharged from hospital a week ago after a subarachnoid hemorrhage. So thankful to have come across this blog. I feel SOOOO lethargic and weak….like this is now my “new normal”. Thank you for giving me hope that things will indeed get better!!

  • Harsh Kothari


    It is interesting to go through the blog and reading the experience of all participants.

    I was @ Nepal to attend family wedding on 14th April when I 1st had an epileptic attack. It lasted for almost 45 min and I don’ t remember anything during what happened to me during those 45 min. The attack was so severe that I dislocated both my shoulder joints. Was been immediately rushed to local hospital in Nepal. I was been discharged post 1st aid and anti convulsants medicine was prescribed by doctor. On 21st April I returned back to Kolkata (India) along with my family. Whole day was spent @ Kolkata for checkups to . On 21stApril while taking rest @ home I again dislocated my right shoùlder, with lot of pain immediately contacted Doctor and on his advice got admitted to Hospital @ around 11pm. Next day MRI was done and low grade Glioma tumor was been detected. Doctor suggested surgery and on 28th April underwent Awake Crainotomy surgery at Bangalore and almost 95% of the tumor has been removed. It is almost 3 weeks post surgery have started working and going to office for few hours. After few weeks from today have to undergo another couple of surgery to fix the shoulders. Trust me it is very frustating & irritating to under go so many surgery. The tumor was Grade II low grade glioma, although it is non cancerous but it can be cancerous after couple of years. Post surgery will go to bangalore for follow up check up, not sure what doctor will say ??

    Sorry for such a long post just wanted to share what I have gone through and still going through. Liked 20 things post surgery and itmatches very much with mine as well. Thanks for this blog very useful & imformative.

  • nell

    I am in the middle of getting testing done for some epilepsy surgery. Theres a 80% chance i am going to be able to get it. But i have been boxing for 1 yeabut now because of the surgery i cant do it. i have been asking diffent doctors and some said yes and some said no. i was hoping someone would know if i could because i have worked hard at being able to fight.

    • morgan

      Nell, this may be a late reply for you since your May post, but it may help. I had epilepsy surgery 2013, and was often told different yes and no’s answers on different subjects. Don’t ride a bike, and take a bike ride. Don’t be alone for 24 hours, and be sure to have someone with you for the first 48 hours. As for boxing, your head is going to hurt post surgery so you won’t want to be touched. Weeks and into months on end. Recovery is a relaxing time and your usual daily workout probably won’t be something you can even try to do for weeks. Don’t feel off because you can only lift half the weight you used to. Be patient, trust me. Even without knowing me, trust me,

  • Swanny

    helped me a lot, my best friend had a tumour removed 10 weeks ago, and we are still going through the motions, she never thought it would take this long to recover, and, because of her feelings i googled and came across this, you speak like i would to her, the lovable name calling (took her a mini pool table and a magna doodle into hospital as flowers are not allowed, she has severe tremours so only she would see the funny side of that) the physio people loved it, Keep recovering and thanks for the insight Swanny x

  • Brianna

    I will be having surgery in the near future and I was wondering how did your hair grow back and what was the experience like? Thank you

    • Everywhereist

      Hi Brianna! The good news is that most doctors try to give you a workable haircut – in my case they just shaved a small channel in my hair, and I was able to comb my hair over it (super easy!). The hair that did grow back is a little bit more wavy/frizzy than the rest of my hair, but honestly, no one would ever be able to notice it – just me!

  • Karen

    Hi, Just wanted to thank you for this blog, I found it difficult to find anything really on how it would feel after surgery on the internet. I had a nine hour surgery two weeks ago to remove a 6cm Meningioma (Benign thank goodness). I had read your blog prior to surgery and it helped so much but i still was unprepared for the aftermath of pain. Under control now but still get headaches when i lie down at night. Also get like jagging sort of pain on the site of surgery, assume this is normal. I have a few other symptoms like slight weakness on right side, shake a bit, and eye sight not brilliant, which i am really hoping settles down and are not permanent. Also seems to take a while for the brain to kick in, focus and concentration not great yet. Trying to be patient. Thank you for sharing your experience and making me laugh.

    • Everywhereist

      Karen – I hear you: the pain is absolutely the worst at nighttime (I had to take some seriously strong meds every night). And yes, the “jagging pain” (great way to describe it!) at the site of the surgery does subside. My doctor told me to massage the area (once it is fully healed), to help ease the discomfort and break up the scar tissue.

    • Sandy

      Hi Karen

      I am 5 weeks post op from transpheniodal (through the nose ) surgery to remove a 3cm meningioma sitting between my optic nerves and over my pituitary gland. I feel that my recovery is progressing well except for headaches that range from moderate to severe when I wake during the night and in the morning. They usually go away within an hour or so but not always. I’m wondering if others have experienced this and for how long. I’m planning to return to work next week and am nervous about the headaches.


  • Shauna Morales

    I wanted to thank you for your list of what to expect, it has been without a doubt the most informative piece that I have found since my surgery in April. It would be great to see this be given to patients before they are being discharged so that once home things will not be so scary and there would not be 20 million unanswered questions. Thank you again it was much appreciated.

    Warmest regards,

    Shauna Morales

  • Marilyn

    I am glad I found these blogs. I recently found out I have hydrocephalus and need surgery for it. They will make a dime sized hole in the top of my head and poke a hole in the floor of the third ventricle to allow the fluid to circulate. Nobody mentioned pain….still not sure what to expect. This is called “minimally invasive”, yet they will drill a hole and poke around in there. Has anyone else had this done? They said I would go home the next day. Yikes! I don’t know what to expect since most of what I’ve read sounded more invasive.

  • Joane

    I just happened to google “brain surgery recovery” and stumbled upon your post. My best friend of 15yrs just went through this life changing experience about 3 weeks ago. I live in New Jersey and she is in Florida but ai was fortunate to visit her at the hospital until her last day there a week and a half ago. Now that she’s home, things have gotten worse. She was in a better condition at the hospital. In the past few days, she’s had 3 seizures, and now she’s not talking and her eyes are closed. I speak to her mom regularly since i’ve traveled back to Jersey. She is currently at the hospital with a huge amount of mucus stuck down her throat but the part that scares me is that her eyes are fully closed and she’s not talking. I am getting worried and starting to lose faith. I’ve never had to deal with a situation so serious before in my life. Your post gives me a bit of encouragement after reading. So I thank you. I’m hoping for the best for my dear friend and maybe one day thing will get better for her as they did for you.

  • Ryan Hartman

    Absolutely love this blog. Spot on. I too recently joined “the club”. I had a 3cm tumor removed from my brainstem. I have 24 metal staples running vertically down the back of my head in the middle of some ridiculous reverse Vulcan mullet haircut. I think the residents that do the shaving should go to barber school. My advice is don’t be afraid to use the pain meds when needed but be brave enough to see what it’s like without them. I think you’ll be surprised how far Tylenol will go. Don’t pass over the ducolax either. I agree on the sixth sense. I think that’s the best part. And yes, I think back and can’t believe how surreal the experience was/is.

  • Kayla

    My Daddy just had a tumor removed from his brain on Monday, he has been combative and saying crazy, mean, and off the wall things. Trying very hard to get out of bed, and saying that he just wants to die. They are saying some people have a bad effect to the anesthsia and it will go away with 24 to 48 hrs. Today marks 72 and he is still being that way. It is scary and truamatizing to all around. Is this something that happen to you as well or any other info that you found on it?

    • Bob


      I had my brain surgery over a year ago. I did not have the side effects your Dad is having with anger right after surgery. I dont know why he is doing this? I wonder whether or not the tumor was cancerous ? And if that could be a reason?

      My daughter was 13 when I had surgery. I felt terribly scared for her and very angry at life because of that.

      I imagine/know your Dad loves you very much. How could he not? You are caring and open enough to search for answers that will help all of you. He needs that right now and he will be very proud that you are searching for answers that he is not be capable of finding right now. Please let yourself know that he does love you very much and let him know that you will be okay no matter what the outcome.

      My daughter, wife and I are very blessed with a positive outcome after 6 months of chemo. I wish you and all readers/writers of this blog and their loved ones the very best. And if even possible I am willing to share my blessings with all of you. With the tremendous gift I was given over one year ago, I would be selfish not to.

      I hope you can come back and read my comment as you wrote over two months ago. Hope your Dad is getting better.



  • Charlotte Camilleri

    ”The petty things that bug you will fall away, and you’ll just be really grateful to be alive. Enjoy that feeling for as long as you can.”

    I remember having this feeling when I was very sick, thank you for bringing that feeling back. Sometimes we need to stop what we are being negative about and remember all the reasons we have to be positive. 🙂

  • Jim

    Awesome blog. It helped me. In aug 2013 I had a meningioma 10 cm x 7 cm removed during a ten hour surgery after passing out at work. All the signs were there but I did not realize I could be that sick at 33. After surgery I had to learn how to walk again. Doc got it all and still have to get checked every so often. It was like starting all over. Never knew about the post traumatic stress I’m still working through now. Flashbacks and panic Attacks are still getting to me but I’m learning to get through it.

    It’s tough to deal with this but keep your head up. The little things that bothered me in the past don’t really bother me after this eye opening experience.

    Still feel like a mess physically and mentally but keep running and exercise.

    Your attitude will be your best asset. Always fight for that recovery. I have to remind myself I had brain surgery every day. I’ve been given a gift where I can now see the things in life that matter most to me. I had it all wrong before.

    If you or any one you know have to deal with this, blogs like this can help you come to terms with this. Others have made it to a recovery. You can to.

    Use the experience as your fuel to “awesome” and pay the support forward.

    It’s all about your attitude.

  • JustMe

    Thanks for this blog. I hope you continue. I had a non-cancerous tumor removed a little over a month ago. I hate this. I should be thankful and all I can feel is angry, depressed and tired. I can walk and talk, but I stumble when I’m tired and I get tired so easily. I can’t concentrate and I feel horrible (both physically and emotionally). My doctor says this is all normal and I’m doing great. This isn’t great. My sister and parents are of no help so my husband is left to take care of me. He hates it too. He gets angry b/c I’m sick (very nauseated and dizzy) every morning. It’s hard to get out of bed in the morning I’m so sick. I can’t drive for at least a few more months, so I’m utterly trapped. Did you feel this way? How can I cope? What can I do to try to get better?

    • Dawn

      I hope that you are feeling better now. My surgery was October 14, 2014 and I feel exactly like you described. I know I should be thankful the tumor was beign but I am so angry and depressed that this happened to me. The lost wages and medical bills are stressing me out so much. Plus loss of time with our 2 year old grandson. And I lost all of my fall time in my flower gardens (the whole backyard). I have such memory losses, trouble sleeping at night, and moodiness. I hate how my scar looks but others keep telling me “it doesn’t look that bad.” Easy for them to say. My incision aches constantly and half of my head is numb. I think that my husband is tired of hearing me complain. And the no driving for 6 months is making me feel such a loss of freedom. I am trying to rest, take good care of myself, eat well, exercise, and keep positive. And my faith definitely helps. This just seems like such a bad dream and all I want to do is wake up on October 2, before my seizure when this started and my life changed forever. I hope that things are better for you now.

  • DarthBunny

    Hello – you’re amazing. This is exactly what I needed to read. My husband is going in for brain surgery tomorrow – and though we’ve spoken to doctors and nurses about what to expect, this is a much better breakdown about the recovery process. We were a little shocked that everything sounded routine… and then they said there would be 3 months recovery time. So we’ve been thinking about that for a few days, but this is such a nice and comforting but realistic view on what to expect. Thank you, seriously.

  • Rick Darcy

    Great Blog!

    On March 2012 I had an abscess removed from my Left temporal lobe. You may also find that you are not hungry for awhile after surgery. It took me at least a week before I had the desire to eat but when it came back I ate like a horse. Two of everything please. 🙂

    I would record my neuro visits on my phone because after the first couple of visits I knew I would forget everything he said.

    Don’t rush back to work if you don’t have to. I was fortunate enough to have short term disability and used every day of the three months. I could have taken so much more time off. Sales is stressful enough 🙂

    Enjoy the next chapter in your life! You get another chance to live life to its fullest. That’s how I feel at least.

  • Hi everyone, thank you so much for sharing your experiences and information on what to expect. Im going to have surgery in 10 days, WOW!!! Ok, have epilepsy and am going to have a crainiotomy on the 21st to do do a brain mapping (electrodes are going to be placed on my brain) to see where my seizures start. A couple of days later I’m going to have a resection where the part of my brain that’s causing my seizures is going to be cut of. I’ll probably be out 3 days later. I only have 3 weeks to recover. I need to go to school. I get my health insurance through school. Do you guys think 3 weeks is enough? Any information would be greatly appreciated ♡

    • dgrrrl

      Depending on what was removed, three weeks will probably not cut it (pun intended.) Talk to your school, if you didn’t before surgery. You have a very good excuse for missing a quarter. They may be able to work out something to keep your insurance active while you’re away.

      In 2001 i spent 2 weeks of brain mapping, then had most of my left temporal lobe and all of my left hippocampus and amygdala removed.

      While in the hospital i had no desire to eat. None. I literally did not eat for 3 weeks. I had plenty of extra weight to spare, and i’m sure the hospital gave me whatever vitamins i needed.

      I knew my hair was going to be history so i had some friends come over and cut it off, i donated it to Locks of Love (http://www.locksoflove.org). It grows back, you’ll just wear a hat or a bandanna for a few months. If i never wear a hat again that will be just fine.

      I stayed home for a few months, had a speech therapist visit once a week. I have no problems with intake, just output. For the first few days after surgery, all i had were swear words! What helped me the most: read to myself out loud. (I still do it occasionally.) Had to make new paths from brain to mouth. I’m still awful with names, and sometimes have trouble with nouns. I work around it, use a different noun. Or just shut up & listen.

      Weird side effects: when i went back to work, i had to relearn typing. I still knew the hand movements – to press key X use finger Y – but had no clue which letters were where. Had to stare at the keyboard for a few weeks.
      Also my hearing improved. Maybe because my ears are literally re-aligned?

      If you go to an optometrist, make sure they’re aware of your surgery. When they do the field test where they blink random lights and you push a button, you aren’t going to see all of them. Nothing wrong with your eyes – but the path between that particular area and your occipital lobe is gone. This probably won’t cause you any problems, since we can move our eyes to make up for any small blind spots. When i first went back to the eye doctor, i didn’t think to tell them about the surgery. They freaked out when i missed a bunch of lights, when i told them about the lobectomy they were very relieved.

      My memory is not good, but because of that i’m really good at keeping track of things – i write everything down, so i do all the scheduling for my employer. Go figure.

      Take care of yourself. It’s a long road, but worth it.

  • Scott

    I had brain surgery back in 2012 and am scheduled for a second in a few weeks (found out yesterday). This is a pretty good summary and reminded me of a few things. Great laughs …

  • This is a great place to realize how lucky we all are to have the technology to communicate with so many people that have or are going through the same difficult challenges brain surgery has presented us with. My doctor did not even come close to describing the changes to my daily life. Thank you to everyone and good luck moving forward from this life changing surgery. In my heart I know I will make a full recovery from my brain surgery even if that recovery is not what I expected it is better then not having the surgery. Good luck to all and let’s all get better through laughter and positive thoughts. Dirck, ca. 7-8-14 surgery

  • Denise


    I just read your blog about the 20 things after brain surgery. I had a tumor removed on July 30, 2014 and coming up on my 1 year anniversary. I am still recovering from the facial paralysis from the surgery. I loved this blog because it was SO TRUE and FUNNY. I wish I would have seen this when I was home. Thank you for your wonderful writing skills, candor and humor. You help individuals who have done through a similar experience feel much better about the situation as well as give some insight to those who about to have brain surgery. My best to you. Thank you for your blog.

  • Renee

    Recovery Question:
    What did you do while in the hospital after surgery. My MIL just had her operation done yesterday and she can’t watch TV, read, go on the computer or anything. I had my husband ask about the radio and the answer was no to that too. I understand they do not want to stimulate the brain to avoid swelling but I worry that the boredom could make her go crazy….at least that is how I would think I would feel stuck in a small room with dimmed lights dong nothing. Did you get bored or did you sleep so often that between visit’s from friends and family time passed?

  • Melanie

    My 6yr old daughter had a craniopharyngioma almost the whole size of her head, mostly fluid thank God. We had no idea what was going on because the tumor would shift and symptoms were very subtle and inconsistent despite that I’m a nurse. The surgery went great but she got meningitis right after leaving us in the hospital for 24 days. They physically couldn’t remove the whole tumor because it extended to the opposite side so they left the sac of the cyst. She will probably need another surgery in the future because of the chance of regrowth is a lot higher. They didn’t put a shunt in and as much as I don’t want her to have it, I’m worrying about the chance in the future. She has so much more room in her brain now! If she moves a certain way, she gets a very very short lasting headache, more like a head rush. Has anyone experienced this? I’m worried about building intracranial pressure but she has no signs of it. Can everyone give me some insight of the symptoms that would happen after you went home? It’s hard to get a 6yr old to explain these feelings. I wish everyone here all of gods blessings And all the strength you all need to handle this because I know it can be very difficult. I’m so happy I found this site so I can speak with more people about brain tumors and surgeries. Thanks: ) Melanie

    • Bob


      My surgery was over a year ago and my tumor was only the size of a walnut. I still get weird sensations when I am dehydrated and or tired kind of like your daughter. Very good quality fish oil pills may also help? They help lower inflammation and therefore some pain too. I also did Boswellia caplets, extract that had 85% purity right through my chemo and right after surgery. Lots of berry smoothies would be great for girls her age. Great for fighting cancer too…lot of fresh veggies whenever possible!

      Good luck to you and your beautiful and strong daughter. Sounds like she should be talking to adults or at least the way you explain her symptoms seem very advanced : )


  • Renee L

    September 7th, 2011…

    Had a Supra cerebellar infratentorial approach for a few pineal cysts that were growing underneath my pineal gland which stretched the gland. This is what allowed my 9th Neurosurgeon to see something was really wrong. After struggling for 18 months and multiple doctors, I finally was able to find a doctor to take care of me. It’s been almost 3 years. I am still a mess. However things are getting better.

    I divorced my husband, lost my job, became a grandma way too early, and my oldest daughter got married. Life has been full.

    I was in the hospital for 27 days…. they did a spinal drain in order to lessen the chance of moisture in the brain for healing. Well they couldn’t get the leak to close.

    I wish I had read your post earlier. Lol

    Sooo for all this time it’s like I’ve been waiting for “something to happen” as if there’s some bell that will go off to symbolize that wait for being normal is over.

    8 weeks post surgery I thought I was invincible. For goodness sake I made it through major surgery. I went back to work and was not ready. I worked hard at simply walking. Taking a shower was the hardest thing in the world for me. Here I am going to work like I had gall bladder surgery or something less traumatizing. I wrote code as a reporting analyst, a highly stressful job with a mortgage servicer. Not being able to remember things made me feel like I was a lost cause. I slowly fell into a depression. I wanted nothing more than to just die. I failed my children every day. My husband didn’t look at me the same and my family fell apart. I was raised by my father’s side and my mother took control and kept them away from me. The family I knew and loved was nonexistent. I couldn’t think straight. Definitely lost myself between it all. My oldest yelled at me for neglecting her. What was I good for?

    Last May 2013… The doctors thought I had cancer… my white blood count was above 24k. It’s still high but they don’t know what it is and they did a bone marrow biopsy and did not find cancer or disease.
    Either way… due to the depression I was on meds… Oh did I mention the Fibromyalgia? I was on meds for that too. I decided one day I was going to stop all meds… I was put on leave from work. I quit drugs cold turkey… which I don’t suggest. I was so very sick for over a month. I now am only on blood pressure meds only, yay!!! Apparently those are a necessity.

    About 1 month ago I started remembering things. 2 years and 10 months I am starting to feel some sort of normalcy.

    Anyone out there that has had brain surgery just hold on. Yes, you are different. And that’s ok. That doesn’t change your heart. Keep believing in yourself. I was so strong prior to surgery and felt so helpless after. I was trying to go back to who I was not realizing I had a second chance to learn from my mistakes and become something better.

    Thanks for your post…. hope you are doing well!

  • Thank you again for this blog. My dad just had surgery to remove a golf ball size tumor on the top of his brain. He’ had the 12 hour surgery on Monday and is still on a breathing machine in icu 3 days later. Is this normal? I read threw every comment and couldn’t find anything about being sedated for such a long period of time? He’s had 2 small seizer since surgery and maybe that’s why they want to keep him under?

    • Eileen

      Jamie Terry: I know this may be easy for me to say, but try not to worry. Your dad is where he needs to be, getting the care that is required for him right now. My mom was on a breathing machine for several days and in my opinion, that’s is really difficult to see, especially when it’s a parent. My brother couldn’t even handle and left the room. She made it through, just fine (but it took a while.) Every surgery / type of brain tumor or injury requires different procedures to be done afterwards. It depends on so many factors and protocols. Age, comes into play, too. I’m not a doctor, just been through this with my mom and it was tough. Think positive – your dad needs you to be there for him. Difficult as it may be, you need to be strong. He’s being well taken care of. I was in ICU for 9 days after my surgery but no ventilator. However, after I was mobile enough, was able to walk a little down the hallways in the hospital, I did notice other brain surgery patients that were in the same situation as your dad, using breathing machines. It looked like there was a variety of ages there, too. Saying a prayer for your dad and you .. .

      • Jamie

        Eileen, thank u so much. You were exactly right! My dad finally came home 6 months later and is learning how to walk again. We don’t know went wrong during the surgery that initially caused him to be a quadriplegic. After months of rehab he’s regained full upper body movemnet. This was the hardest thing for me, his daughter, to see but it’s definitely brought us closer.

  • aileen

    Thank you for this blog and everyone’s personal experiences. Reading all of this has really helped me. Earlier in June 2014, I had a benign meningioma removed from the right side of my brain. The surgery was successful, and I was recovering very well. Then I had my first MRI since the surgery about two weeks ago. It was quite a surprise to my medical team and my family to see that it showed I developed a subdural hematoma. (I did have a CT scan the day after my surgery, but it did not show the hematoma at that time.) I was not exhibiting any major symptoms, but because of its size, my neurosurgeon felt it needed to be treated right away. I admit that I was really nervous about having two brain surgeries in just 10 weeks. I was discharged from the hospital after my second surgery a few days ago, and I’m going through the recovery process all over again. This time, I feel like I’m not getting better as quickly as I did the first time around. I keep telling myself to be patient. I just hope things pick up, and I start to feel “normal” again.

  • Lori

    I am so glad to have stumbled upon this. I am having brain surgery this Tuesday. I’ve had a tumor in the thalamus since May and they have not been able to determine what the tumor is so I’ve had no treatment. As much as I didn’t want another tumor, it’s operable, so they can take it out, hopefully figure out what it is and I can have treatment so I can get well. There were so many things I didn’t ask the doctor and this helped a lot. The pain from cutting – yes. I still have pain from my biopsy in my skull – 3-1/2 months later. I hope anyone reading this who has gone through this mess is doing well and you are all getting better. This is one journey we didn’t need, but we’re all going to be stronger for it!

  • Lori

    Ironically, I had anger issues (and still do) after my biopsy surgery. So I can’t wait to see what might happen after the actual surgery. Thank God my husband is patient and loves me and his support is amazing. I’m not so sure I’d still be here if I were in his shoes. Don’t expect too much too fast. Let your body heal. Rest. Rest. Rest. You can’t get too much. They did cut your brain. remember that.

  • Sandy

    I am 5 weeks post op from transpheniodal (through the nose ) surgery to remove a 3cm meningioma sitting between my optic nerves and over my pituitary gland. I feel that my recovery is progressing well except for headaches that range from moderate to severe when I wake during the night and in the morning. They usually go away within an hour or so but not always. I’m wondering if others have experienced this and for how long. I’m planning to return to work next week and am nervous about the headaches.


  • Sarah

    I had a benign meningioma (left frontal) removed on 7/11/14 and am delighted to have found this blog. Most of what you write about is very accurate but most of it is pretty well past for me at the 2 month period, but was very interested in the longer term issues. I am not back to work yet, am figuring at least 3 months before going back to work a few hours per day, maybe 10 to 15 hours per week for a while until I can feel up to increasing the time. I don’t know how long work will give me to go back to full time or try to medically retire me, but will sure try to make it back to full time before they medically retire me. I’ll have less than 3 years to go before I can retire once I go back to work.

    I feel SO fortunate not to have any headaches like I used to have, no sight, hearing, memory, motor function, speech, etc., type losses. I have read about so many who are permanently affected negatively after brain surgery. I can only be extremely thankful for a brilliant surgeon and staff and extreme good fortune in diagnosis, hospital time and care from friends for about 2 weeks post-op before coming home. I’ve not had any seizures so far and feel really good, but am aware that stress, adrenalin flow, or exertion will cause fatigue within 3 to 4 hours and then I need a couple hour nap. Still spend an average half of the day sleeping and I love the ability to rest when I need to.

    I’m so fortunate that I am off all medications now except one anti-seizure medicine and have just a few days of that left and then I will be off of that medication also. It has been very surreal from the time the urgent care Dr. told me I had a brain tumor, even to now, especially since I seem to have no noticeable adverse after effects from the surgery. I’ve had a wonderful friend who has helped me with some alternative medical suggestions and they have worked wonderfully, so have to give a lot of post-op credit to that. I have found Peppermint essential oil has been critical to reducing the swelling or inflammation inside and external to the brain. I’ve used it on the vita flex points on hands and feet for the brain and while I can’t explain why for me, I also have rubbed it on the top of my left foot and back of my right hand. I’ve been putting up with the itching of the scar line letting the scabs come off on their own with healed skin underneath. Probably my biggest problem has been that I wake up and find myself sleeping on my left side. Guess it hasn’t hurt anything much. I sleep with a soft hand towel on my pillow and change that every day rather than the pillowcase. I have the hand towels and not the pillow cases. I don’t ooze any sort of fluids (thankfully) but do have one little spot on the scar line that got scrubbed too hard at the Dr. office during a “cleaning” that has bled and continues to be a scar trouble spot. All the bleeding has been under the skin and it is probably no more than 1/4 inch long and no wider than the scar. I’m hoping months of leaving it alone will help it heal as it should.

    Thanks again for your blog and for all responders who have provided additional suggestions or provided information on what you did in your individual circumstance. I like the approach because no one is suggesting anyone else follow what worked for them, but just providing what did help them in their individual case.

  • Jill

    I had brian surgery to remove a benign tumor on Aug 11, 2014 here in NYC and after googling ‘brain surgery/how long will i be tired?,’ I came across your blog and absolutely love it. Your “20 things” brought many laughs (and almost tears when you told me you were not fully back to normal after a year!) All of they are so true!

    Unfortunately I had several complications to include a cerebral spinal fluid leak from a puncture in the spine during surgery that went undetected for 4 days then severe hormonal issues that caused near fatal hypotremia. I’m a healthy, active 37 year old female and just thought I’d be further along than needing to take naps after working just 6 hours. I’m trying to be patient with myself but dying to get back to the gym (I have but don’t tell anyone), running and my regular life.

    Your blog has been so helpful, thank you!!! Keep up the positive attitude, we all love it 🙂


  • Doug

    #20 and the thirst. I remember for a couple of months I couldn’t wait to get home and do all the things I had never done before. A sort of post surgery bucket list. I think it was the morphine as much as anything else. But I finally realized recovery was a marathon and not a sprint and finally figured out I was in for the long haul.

  • JP

    I stumbled across this post by accident, reading something else mentioned on a totally different topic (work related).

    It ended up reminding me of many things. Your list is spot on and I pretty much can recall each point. Wish I had seen it about 10 or so years ago though! I still get MRIs to this day every couple of years, as some of it still remains – but am long off meds for now. I still get tingles here and there and nights where I sleep on that affected side. Drastic weather changes or altitude changes sometimes trigger it. But life since then has been much better than life before then.

    Its great that you made this post and so many people have confided in it. Even all these years later its still a major part of my life (but as a positive, not an obstacle) and still I base things pre-post that time. Spoiler alert – All the good stuff was “post”. Thanks.

  • Tina

    Thank you for writing this and the 70 things list. 4-1/2 yrs post op and life is pre-tumor & post-tumor. I too can remember each step of both lists, some with my own twist of course. It just is so rewarding to see someone else be able to put into words exactly what it’s like! Best wishes to you and your friend, signed fellow brain tumor survivor, living the “new normal”!

  • Shannon

    I had brain surgery in January 2014 for an unruptured aneurysm and I found your blog about 3 months after. It made all the difference in the world to know the things I was dealing with was normal. I live in a small town with no one to turn to for the after effects. My neuro’s are 4 hours away so I couldn’t just go into the clinic and chat. I thank you from the bottom of my heart for writing this blog because even with the best people in the world surrounding me and telling me it was alright I had to see it or hear it from someone that actually had their head cut open and their bran played with to believe it.

  • Tania

    I had 2 brain surgeries in 1991 for a condition that started > 10 years earlier. The condition is neurological, the doctors with I have tried more medication changes than I have fingers and thumbs. The 2 surgeries resulted in a much poorer memory skills, making academic studies much more difficult, my memory of what I’ve done in a day, yesterday or last week poorer, and now I’m faced with the choice of surgery. As the condition progresses I can lose freedoms (I could never drive because of it, public transit workers have mistaken it for rude behavior , kicking me off the system, teacher when I was young mistook it for purposeful class disruption, etc…

  • Salley Johnson

    Just a quick question…..I had brain surgery two maybe three months ago….trying not to count, but now I have this insane itching on my scalp…..That’s normal right?? My doctor told me it was, but dear god he didn’t say that it would be like this. I was just wondering if anyone else had issues like this?? That and is there support groups? I just feel a little loss and dumb when I try to talk about it with others that I guess forget that I had my scalp cut opened and rooted around in.

    • Steve

      Hi Salley

      I’ll say yes it’s normal. I had my surgery in May 2011 and my scalp still itches. My incision was from the hairline in the middle of my forehead in a big arc to just in front of my left ear. I have other odd things going on as well. If I scratch at the hairline above my left eye, I feel it on my eyelid. Three years and I’m still not used to that! So hang in there!

      • Everywhereist

        Thanks for weighing in on this, Steve! I have scar tissue, but it mostly feels like it’s pulling my scalp – never itchy.

  • cbb

    I stumbled upon this blog when I Googled ‘Funny gift for someone who has had brain surgery’ thinking good thoughts after learning a friend who went in to have tumor resected ended up getting it completely removed (surgeon must’ve been McDreamy). He came out on the other side with the same sense of humor and straightforwardness that we all know him for.
    Five days later a parent I know announced that she recently found out that she has a brain tumor that the Dr’s think its benign. They plan to surgically remove it on October 2nd.
    I shared the link to this blog with the friend who is post op from the tumor he was diagnosed with 8 or 9 years ago (grade II glioma, right parietal lobe) which, they discovered in Feb ’14 was showing evidence of the tumor progressing in grade (taking on blood volume…bad). He shared that the best treatment turned out to be surgery to remove as much of the tumor as possible while keeping clear of good, functional brain. He is more than happy to share details, especially to anyone who is faced with or who has a loved one who is faced with some sort of neurological disorder. I wish I could share all of this with the parent who has just stepped into this upside down world, but am afraid it would be too much right now.
    Knowledge is power and as the man who still have a kickass sense of humor posted, he sees this as his duty since he has been privileged to work with some amazing doctors across disciplines and institutions. He hopes that sharing his experiences will ease the burden of anyone else going through such a condition. Any way to help the person going through it as well as those who are not, and those who are just facing it.
    His statement a few days ago was the following, “Everyone will be faced with a serious medical condition. The way we faced this was to learn everything we could, challenge our doctors and keep asking “What else can it be?” You can say what you want about the nature of health care in America – trial lawyers, government, insurance companies, corporate hospitals etc… The reality of the situation is that is the only system we have to deal with. If you are not your own advocate, you will be carried along by their system and receive substandard care.”

  • Caroline Roux

    I live in South Africa and tonight, well early morning 01:29 i am laying in bed and JUST can not sleep! My meningioma “frontal lobe” was done in 2010….i became 110% healthy….now i have a problem…could it be because of brain op? I am 50 and have noticed myself becoming, very “not worried” about myself, i dont care to bath, brush teeth, what i am wearing and a lot of other things,. And then…i catch myself being VERY aggresive….i do use Epilim and Epitec for “only after surgery it started” epilepsy. Do you think i could be going backwards after 4 years? Thank you!

    • Wilda

      Hi Carolyn! I had a menengioma removed also in April 2010! Yes, it left me very aggressive but very emotional and with headaches! My opinion is: u must get up or get a dog! It helps! Good luck!

  • WG

    I had my brain surgery 3 weeks ago. I have facial nerve damage due to the surgery which means one side of my face is partially paralyzed. My balance is off and they had to embed a metal plate in my eyelid so it would close and prevent ulcer to the cornea. I’m just glad that the worse is behind me now. Everything else from here on (as far as recovery, rehabilitation) is secondary…considering the tumor could have ended my life. Thanks for your blog.

  • Phalonda Hayes

    Hi…I too am almost a year out from my brain surgery and everything you said is so TRUE!!! I cried (and laughed) and what you said because it’s so on point!!! And yes for me, the hardest part was actually just allowing folks to be there for me instead of the other way around. So happy I happened upon this page. You don’t know me but you have helped to make my day!!! BE BLESSED AND STAY HEALTHY!!!

  • Loving this post and all the amazingly helpful comments. Going in for my craniotomy early November 2014. Can anyone who has Gone Before recommend some items they wish they’d thought to have on hand/around their home to ease their recovery period? Thinking of things like saline, gauze, shower chair, favorite foods, supplements, other medical supplies, etc? Thanks, friends!

    • Eileen

      It was a year in August for my surgery. As I look back one thing I would have liked is some kind of a cap or wrap for my head for the first couple of weeks after surgery. I guess I had one in the hospital (husband says) but I didn’t go home with one. I tried using wrapping an elastic bandage type around my head a few days later, but it just came off. Also, a chair in the shower would be great because you are so weak after the surgery and for a few weeks after – you need lots of help. Instead of soap/shampoo – I used baby shampoo for everything including my body. It worked well for me and was ok’d by the nurse.

    • I had mine in January. I wish I had gotten some books on tape and board games. I didn’t realize that I wouldn’t be able to watch TV (it made me really dizzy and couldn’t really follow it) or read any books ( attention span and understanding were not good). Also, I didn’t cope well in social situations (it was like sensory overload and overwhelming). So, I was very stir crazy and bored and would have loved something to occupy my time that was enjoyable so I didn’t focus on the pain and weirdness after surgery. Best of luck to you!

  • Arlene Burkett

    Hello, very funny post you wrote, enjoyed reading it and laughed out loud a couple of times. I had brain surgery on 7/19/12, By accident they found a 6mm anyerism on the right side of my brain. This is the first time I have written about it.. The first year it does consume your life, it defined who I was. The friend thing is so true, I have close freinds who basically did nothing to help and I have aquaintences who went out of their way to help, very strange but the way I look at is God brings the one he wants to you, so it never bothered me. My recovery was pretty amazing, a lot different than yours. My surgery was 6 hours on a Thursday, found out 2 months later there was a problem, and I was walking out of the hospital on my own that Saturday and driving within a week, I was 61 at the time. I was back at my gym within 4 weeks, I truly beliefve the fact that I was in such good shape helped a lot in my recovery. The whole experience changes your life in ways you will never expect. You really do realize that most “stuff” is BS, and that realization is so freeing. My short term memory still isn’t great, but getting better. For all you who’ve had brain surgery or will be having it I’m here to tell ya, you will survive it and in a lot of ways come back better, different, but better.

    • Raquel Falcon

      I am having that experience with the friends, too – but I’m dealing with it, as reading this blog helped prepare me for such behavior. I won’t act any different towards my friends, but yes, this has changed me forever and I can’t deny it. While I want people to not treat me any differently, I need them to acknowledge what I went through – so we’ll see how it goes when I go back into the world after recovering at home.

  • Morgane

    Oh thank you so much for this article. I just had a brain surgery ( crappy cysts on a bad location) and..I am French, living in the US. So my main concern was to know if I would be able to keep both langages. Don’t ask me why, I should have been worried about plenty of other things but in an irrationnal way, I was focused on this one.
    Well, today I think I still speak English and French. So this concern is gone. But like you, I still feel different from what I used to be, like absent from myself and…that is very disturbing!
    But anyway, I am so glad I found your article. Even if this experience varies from person to person, it feels good to read what we are dealing with. So thank you!!!

  • Wilda

    I had a brain tumor surgery on April 2010! A menengioma! It wasn’t cancerous but left me with daily headaches! It has been a nightmare but still fighting and praying that one day everything will be ok! My opinion is : it takes time to heal this surgery! God bless u all…..and good luck for the one that r having one!

  • Is it common to have surgical packing left in your sinus cavities after a craniotomy?

  • Christie Ward

    I had a tumor removed August 15 of this year (2 1/2 months ago) My left side is still numb from some sort of nerve damage. I wish I had found this before I went in lol… It made me laugh and stop feeling like a freak. It still doesn’t seem real, at all, but I have a cool scar out of it 🙂 I admit to being impatient. I wake up somedays feeling so out of it ,it sucks, others I feel almost fine, except for the numbness. Anyways, I am glad I read this!

    • Eileen

      Christie Ward – I, too, have numbness on the right side of my head. in front of my ear and around my eye on the lid and along the side. As I look at in the mirror, it is swollen compared to the left side, but I am assuming that’s from the titanium mesh plate they put in after the craniotomy. This status has been the same since August, 2013.

  • hi all
    Cannot thank you all enough for your input. My husband was diagnosed with a tennis ball size meningion to the right front of brain in July of this year. It was so sudden. He had very few symptoms prior to the diagnosis. He had been to gp the year before with electric shock type pains going from scalp to deep within the brain which lasted for about 30 seconds which happened 20-30 times a day. He was advised to return to gp after blood tests, which were normal but he never went back. On the day of diagnosis he awoke from sleep appearing very vague and answering inappropriately to questions. Without going through everything, he was given the diagnosis at A & E and surgery 3 weeks later. The tumour was removed completely and was benign. He was in surgery for 5 hours. He was in hospital for 12 days although initially we were told he would be in for 5-7days. He recovered pretty well although he slept for about 16 hours a day and he lost a lot of weight as his appetite went completely for about 3 weeks. I cannot express myself enough to tell you how worried I was and without this blog, I do not know how we would have got through this. I managed to get little bits in him. He also would drink only small amounts too. He was very weak and unsteady for some time but there is light at the end of the tunnel. He now eats and drinks fine and he is very lucky that the are no disabilities. The scar across his forehead is hardly visible. He has become a little childlike at times though and I have to prompt him to do things. If I did not, he would never do anything. He appears very happy to sit watching tv and making (not very nice remarks) at the tv characters. He kept and bred canaries but not showing much interest in them but will feed and clean them if I ask him too. He has lost interest in all the things he used to do and he had quite a few interests. He was learning to play the guitar but cannot remember a lot of it so no interest in it. He has been left with short term memory loss and lack of motivation. Apart from the negative things above, he has the sweetest nature. Eager to please but needs prompting to do everything. The surgeons say it may take 12-18 months before he gets back to normal mentally and they are not totally sure about that. He used to take painkillers for arthritis but since this event occurred, he has never had another painkiller. It is as though his brain pain centre has disappeared if you get my drift. He has been extremely lucky to have recovered the way he has and I see a difference in him every week improvement wise. I hope this continues as it is only 4 months since surgery. He is doing great. Thanks everyone

  • How are you doing now? Any pasting effects from the brain surgery? I had my craniotomy to remove a colloid cyst in the 3rd ventricle that was causing intermittent hydrocephalus in January 2014 and want to get an idea of what to expect and how much I may improve. Thanks for writing this blog. I definitely experienced these things except I experienced extreme insomnia that couldn’t be treated with medication. I still struggle with it occasionally to this day but doing better now. Also, I am now experiencing extreme hunger all of the time which I never experienced before the surgery. Any thoughts??

  • Gabriel Munoz

    i came across this blog looking for information about the recovery after brain surgery. You’re right, there really isn’t a whole lot out there that’s straightforward and practical. My mom just had a tumor removed over the weekend and I wanted to find something to let her know that it’s okay to be feeling the way she is. Thank you so much for sharing your experience. You really helped us more than you know 🙂

  • Teanna

    I had meningitis streptococcus pneumonia a little under five years ago and I’m still trying to wrap my head around it I was just in middle school then being I’m older now I thought I’d understand but I can’t remember enough to understand. Currently I’m 18 I have the memory of an ant and it’s just getting tough for me. More often then not I cry myself to sleep because I feel so dumb for not being able to remember or comprehend what happened and more my life is now forever changed. When random people that don’t understand the severity of what happened to me when I was a child say that I fake my learning disability I just want to give up. I don’t think anyone truly understands because all cases are different but it’s still frustrating.. Sorry for just rambling. I needed that lol thank you.

  • Joashzwife37

    Hey! So I stumbbled upon this while searching for something… I can’t remember what. It’s good and very true.
    Brain surgery is a club and I wish I was’t part of it myself haha. However, I had my second bi-frontal craniotomy August 5th of this year! 2014 <— see I remembered the year! Short-term memory bad!

    My first was a year after I married so 2001. I had a big bad colloid cyst in in the corpus collosal or something or thats what they cut. It was very invasive. The first surgeon wasn't confident as to how to to do it so he bowed out! I did end up with the Michael Jordan of Neurosurgery! He didn't even have to shave my head. SO DRUGGED at the hospital I asked the nurse to scratch my "boob" thinking it was my husband. He had to spend the entire time scratching me all over! I was having a reaction to the morphine. He said I also called my doc captain hook. I don't know, I remember flying around the hospital (didn't actually happen). Snatches of things like how everything tasted of soap or vanilla. I accused my husband of putting the soap in my water several times! Something like,
    me: "Did you put soap in this??"
    him: "No honey."
    me: "ARE you sure???!!"
    I came home from the hospital and slept pretty much for a month. My lovely husband gave me pain meds and food (he says) I don't remember eating but must have. Then the meds were not refilled and boom I was cut off! Intense pain!!! But I was back to work in like a month! Maybe just a little too soon. I don't remember that much. IF i didn't have the scar I'd swear it was all a foggy dream. My scar is like a headband across my entire head actually right where my bangs start… convenient.

    This time around is very different. I wasn't very drugged at the hospital, I actually remember most of my stay. Mostly very kind nurses trying their best to figure out how to control my pain. In fact, at one point they gave me too much Oxycodone and had to "wake me up" with a nasty IV drug. Not pleasant. We had to switch to Oxy because the dilloted made me feel like my face was being pulled down and off! Not being able to take morphine there wasn't a lot of choice.
    This time it wasn't a colloid cyst. It was a Porencephalic cyst expanding in the left side. From what I understand it was due to my previous surgery. Same area and intraventricular (left lateral ventrical) so it needed attention just like the first. I was suffering horrible head pain and went in to the ER where they found it… again. Thats what happened the first time. "We found something" isn't what you want to hear. At the same time if there is a way to relieve the pain yes please!
    I again got a fantabulous brain surgeon that knew just what to do! Praise God! Again the first doctor was like, "If you need surgery I can't do it."

    Anyway its now um let me check the date, November 21st 2014 and I'm being weened off my pain meds. Its not fun to say the least. Been on them for 6 months! Also so much pain! Lord too much pain!
    Having kids and all that I can't take time to moan too much. 😉 They do that enough… Anyone experience pain so far after surgery? My fear is when the meds are completely out of my system, will I be in pain that is out of control? Such a fear right now. Will this ever go away? Will I ever feel normal again? Thankfully the surgeon didn't remove the cyst this time. He opened it up leavin the wall intact. That way if/when more form it won't be an issue. He did a lot actually and it felt really weird. I mean I can feel the opening in my head I can't describe it. It is also really sore where the drain was in the back. Oh and can I just say, when they take that drain out.. ouch and ewww. They numb you with a shot or several and I think the shot is worse lol. Opening things up (the fenestration) Its made my singing even more effortless which is nice. I love to sing:) so counting my blessings.
    I'm not as dizzy and coming off the narcotics I feel more alert.
    Anyone 3 months post recovery?

  • Lizzie

    I know a lot of people have, but I just wanted to thank you for posting this. it helped me know before my surgery what to expect after, and it helped me after to know that I wasn’t ridiculous for how I felt and what I was going through. I had surgery behind my ring eye to clip an aneurysm and ended up having a seizure afterward. Recovering was a monster. Thanks for letting me know I wasn’t alone!

    • Elsje

      Incredible to read all your stories. I’m not alone. I had my surgery the 21 of July this year. I’m still very tired. My tumor was benigne but very large. IT took the surgeon 9 hours but he got it all out. I’m not able to really work yet and since I’m selfemployed it’s becoming rather challenging…. But I’m still here and I’m planning on staying. Thanks for this blog!

  • collena

    Here in the ICU waiting for the MRI and ct scan/shunt precursor to the sx. Thanks for the needed lol comisseration.

  • TC

    Hello Everywhereist,
    Thanks so much for posting. I had read this prior to my surgery and it was of great help. Coming up on a year since Grade II Glioma presented at, yes, a Holiday Party. The ambulance really livened things up. It was a 3 cm in the left frontal (initiation of motor function) section of the brain. Craniotomy preformed shortly after New Year (let the staff sleep off their celebrations before cracking open my coconut). Have had a few related seizures since, but the MRIs are clean, so that’s good. Taking Keppra out of the gate from surgeon but oncologist added Depekote to the mix after the first one. I had to take 6 mos. off from driving. Very fortunate and grateful for my family and friend’s for their support as I could not have done it without them.

    Did some speech and cognitive therapy right after surgery due to mild aphasia. Went to work, probably too early, but hey this is America. Still experiencing mild panic attacks but have learned how to cope. Hang in there, have faith (pick one), and you’ll get through it.

    • kerry

      i have just had second surgery to remove grade 111 Craniotomy ,panic attacks i have had I have not told anyone thinking it is my imagination
      but I feel like i cannot breath and know it will take months before I will drive again if ever.surgery date 4/3/2015.

  • Renmiri

    Thanks for this. My 13 year old is going to get a surgery in a month and I have no idea what the recovery involves. Doctor just told me he needs to stay 3 weeks at home. Apparently quite a lot more involved, heh ? But there is no alternative, like many who need surgery is this or the unthinkable so me and the rest of his family will have to help him through it. This helps.

  • MC

    Please anyone if you have any recommendations I would appropriate it!
    Don’t mean to offend anyone but If you are going to ask me why I went with a certain surgeon or ask me why I made the decisions I made. Please don’t respond to my question. I just need support not anyone to criticize me.
    The reason I say this is I was on two brain tumor support sites & instead of people being supportive some people really crossed the line private messaging me asking me why I was not going with certain surgeons or even looking up my current surgeon or even asking me why I was going to do a third surgery and I should wait & watch.
    When no one even knew about my case.Its a rare brain tumor not a lot of docs specialize w/ this type of tumor. It’s an Epidermoid Tumor its a hard to remove & find once the head is open
    So sorry for writing this before I ask my question, here is my question 🙂

    The Tumor was discoved in 2008 It the size was 6.5cm & was benign
    Since then I have had 3 surgeries to remove this little Fuck*er!
    Last surgery was done on 6/16/14
    How long did everyone wait to go back to work?
    How long has your recovery process been going?
    My 3rd brain surgery was only 2 1/2 hrs. The first two were over 7 hrs long.
    I’m thinking that this brain surgery is not a big deal but I also do have to understand that its brain surgery.
    I was knocked out my head was opened and it was another skull base surgery!
    I’m super tired still waking up with headaches. I’m trying to stay active doing yoga moving around my house I have even signed up for a class at my local JC to keep my brain working.
    I have been off work for now 5 months. My doctor took me off work for 6 months.
    That’s pretty much my story!

    Thanks for sharing your story with me 🙂

  • Thank you for this my surgery was very minor compared to most but a few of these have helped me out loads until I see my doctor post op this week. 13 days post op today

    • Stu F.

      I’m glad I found this. Has really helped me deal w/my situation! Had surgery on Oct. 20. Tumor was on my Cerebellum. Almost embarrassed to discuss my experience compared to everyone here. Seems so minor compared to others. Was home for 8 weeks (including 2 weeks prior to surgery). Had nasty headaches/dizziness/nausea for a LONG time but chalked it up to stress….boy was I wrong! Surgery was done at Johns Hopkins in MD & went well. I experienced several of these…especially people staring at my head…I keep asking if they lost something….funny irony, my band played a charity event for brain cancer research in May….who knew I’d be a member of the club 5 months later. I feel good & doing well. Besides surgery, the hardest thing was giving up my drums for 4 months! I’m back in Jan. & we’re playing anoth event for that in March…Everyone stay strong & positives…& keep your sense of humor!

      • I had my surgery October 2013 and had the same symptoms! I have taken yoga three times a week since april 2014 and it helps so much!! Kundalini mostly. I am back in my studio and making work and send you strength and positive thoughts!

  • rozi

    Will I lose my hair after benign meningioma surgery?

  • Charlotte

    Thanks so much for this blog! It has helped me very much in the past 2 months. Just had a parietal/occipital meningioma removed 2 weeks ago. Surgery took 12 hours, woke up to visual disturbances caused by brain swelling. Anyone else have a throbbing/pulsating in their scalp/head as opposed to severe pain? The feeling heartbeat in head is sure an odd sensation. Weaning off steroids and hoping vision returns to normal soon. The attention span of a goldfish comment is priceless and dead on, thanks so much for your courage and humor! Healing to all of you going through this.

  • gwyn

    My brother had a biopsy December 23rd 2014 on a brain tumor that had been discovered last May. The doctor didn’t want to do surgery at the time of discovery because of the location of the tumor. He had multiple seizures on December 16th, and then started having focal seizures. The doctor decided it was time to get a biopsy of the tumor so they could figure out what it was and how to treat it. During the surgery, my brother coughed and lurched, and there was some damage and swelling in his brain as a result. A 2-3 day hospital visit has turned into 1-1/2 weeks, and he’s now in the rehab unit at the hospital where he’s relearning how to talk and retraining the muscles on the right side of his body. Unfortunately, on Christmas eve, the results from the biopsy came back as a Grade 3 Astrocytoma 🙁 I think all of us were sure it was going to be benign, so it was a shock. Now everything is going in slow motion as we wait for the treatment plan… My brother just did a 100 mile bike journey in Moab on the White Rim Trail, so I believe he has a great chance of beating this, but its hard to deal with what is going on with him now, post brain surgery.

    • kerry

      I have the same as your brother.Retraining the left side of my body is frustrating because it looks like I can walk, until something is put in my way, and I then have to really focus on moving around it . I can see it is not going to be a quick recovery like my first surgery in 2011- I had radiation then so it was just tiredness nothing like this.I have to be very grateful no speech problems really apart from forgetting a word half way through a conversation

  • Toby coffman

    First off congrats on your healing. Thank you for this very informative blog. My sister had brain aneurism surgery a few months ago and I have read many articles and had a very hard time understanding everything going on. You have explained everything where I can understand it. I can’t thank you enough. My sister is healing and doing great. Thank you again and may God bless you and your family

  • Theresa

    Thank you so much for posting this. My dad just had his surgery, and I think it’ll help him tremendously to hear this info from someone who actually went through it (and is funny to boot!).

  • Jo

    Thank you for this. I was diagnosed with a frontal lobe meningioma right before Christmas and am finally getting to see a neurologist this week. All the possible outcomes have had me freaked out. This helps immensely at least with the reality of the surgical part of things.

    • Everywhereist

      Hey Jo! Glad you are finally getting in to see the neuro – honestly, the waiting is the worst part. Thinking of you!

  • AhsanteSana

    I stumbled across this blog while looking up information on concussions, brain injury, etc. It caught my eye because it seems to me that many of the effects of a concussion are very similar to that of chemo (I am a survivor of cancer). As I read your blog, it seemed that many of the after-effects of brain surgery are also similar. Chemo does damage to the synapses in the brain; it takes time to rebuild. So, I work at it, but it’s slow going. The responses of people is similar, too, I think. Some people disappear, and some show up ready to help. Yes, healing can take a long time. Going through something like this – major surgery, cancer, etc. certainly “re-sets” our priorities in life, doesn’t it?

    Best wishes to everyone here who has gone through this, or facing something similar!

    Remember that you are braver than you think…

    • February 9, 2015 at 11:39 am
      Hello everyone. I am running a Mindful drawing workshop in London through the brain trust on March 9th. it is a free workshop and will be a fun and relaxing three hours with lunch included. If you would like more information please email meg@braintrust.org.uk or lula@braintrust.org.uk best wishes and hope to meet a few of you! from Michelle

      • Thank you for posting this! I forgot to mention that the workshop is for anyone in our community, people who are at any stage of treatment and post treatment and carers! i am really looking forward to this!
        best wishes,

  • Jim

    I was having seizures in May 14th, 2014. ambo’d to the hospital and diagnosed with golf ball sized meningioma left frontal lobe. Surgery to remove the tumor on 19th, released 4 days later. In my case, the surgery was nothing compared to the reaction to the Keppra. No pain before nor after the surgery. I had the titanium plates surgically implanted to hold everything together and never had any pain, headaches nor any other difficulty. Some blurred vision for a few days, a sensation of electricity running through my skull and numbness/tingling down my right side. That has since subsided, however, the reactions to the Keppra were severe. I became super depressed, extremely irritable to be around and very judgmental toward others for the smallest things. Could not sleep more than 3 hrs and I still have short term memory loss and some balance problems. It has been 8 months since my brain surgery and I feel like I am slowly returning to my old self. Had a follow up MRI brain scan two weeks ago and will have the results read by my neurosurgeon on Feb 17th. Not being called by the doctor since the MRI, I consider a positive. I have all the respect in this world for neurosurgeons and their assistants.

    • elise

      Are you still on Keppra? Did you get the depression quickly or after being on Keppra for a while. I had my op 3 weeks ago and my experience sounds fairly similar to yours. I feel ok apart from tingling down left side (mine was on my right), tiredness and anxious/scared feeling in the last couple of days. Not sure if I am trying to do too much too soon. Haven’t had bad depression, just more emotional than normal. Hope you had great results in feb

  • Mary

    I’m having a benign brain lesion removed next week and I am so grateful to you and your blog for helping and informing me during this stressful time! I’m 28 and can really relate to your emotions and experience. After having an initial scare of a possible glioma, I’ll gladly take this in stride. Thank you again for your honesty and humor. There is an awesome bakery near my home and I’m looking forward to a recovery full of cupcakes 🙂

  • I am going to have my tumor removed in a week, and I am so scared and still trying to be positive. Thank you for posting this, its helped me so much. I hope to be as well as you are when this is all said and done. Thank you from the bottom of my scared but strong heart.

  • Loved the tips. I just had brain surgery 3 weeks ago tomorrow. I was glad to read that people feel like I do and are foggy in the head to. I’m like a space cadet in some bizzaro world! Mine were benign but I had a chiari malformation repair as well. Thanks for making me feel not so abnormal.

    • Everywhereist

      You are definitely not abnormal! I was so foggy in the weeks after my brain surgery – honestly, just being able to use the internet and type coherently is a huge accomplishment! Wishing you a speedy recovery!

  • Wow! You can find anything on Google, but I never expected that I would find a post about dealing with the after effects of a brain surgery! I had a brain surgery in ’89 and another one in ’91. I also experienced a lot of the after effects that you described. Here’s the weirdest – now I have an incredible sense of smell also. I don’t know where that comes from, but it is a fact. Thanks for your post. In the big scheme of things, a brain surgery is not that rare. We just do not hear about it that often.

  • Roz

    Did anyone lose their hearing after AN brain surgery?The benign tumor was on the right side and my left ear hearing is so acute it’s annoying. I have constant pressure in the back of my head. It’s been 7 weeks since surgery.Thank you for this blog.

    • Susan

      I lost the hearing in my right ear after AN brain surgery in 2011. I am a tap dancer and it has made my craft very difficult. I can’t distinguish the music from the taps. In social situations things are also difficult. Restaurants are hard, or in a group when there is more than one conversation happening or if there is music playing in the background, etc., all I here is Blah, Blah, Blah ,Blah…..all the sounds are mixed together. I have a set of special hearing aids that only work in some situations. You might find them helpful. The right one is a microphone that picks up sound and sends the message to the left ear. So anything that is said on the right, is heard through my left ear. For instance, If I am driving and I have a passenger, with the hearing aids in, I can now hear my passenger speak ( provided there is no radio on). Have you noticed yet how when people hug you they always go to your right side when they lean in? Or if you happen to be a dancer as I am, when you dance with a partner your right ear is next to your partner, left ear away,- for both the leader and the follower. In both of those instances the hearing aid helps me to hear people when they are up close, again, providing there is no background noise (kind of unlikely while you’re dancing though.) Unfortunately, everything else just gets magnified too, so sometimes I hear all the sounds mixed together and now they’re just louder. So I have to take the hearing aids out.
      Also it was nice to know that I am not alone and not crazy as far as the senses go. I smell and taste things all the time that are not there. It’s a big joke in my home that I always ask “Does anyone else smell smoke?” “No, the house is not burning down Mom, there is no smoke” I taste salt in my mouth all the time in when I’m not eating anything. It’s disgusting.
      But the worst problem I have is debilitating fatigue that hasn’t gone away . It’s been almost 4 years and it has made it impossible for me to do my job (dancer). In fact I can’t even go do the food shopping without having to come home and take a nap. I want to know if anyone else has dealt with life altering fatigue and more importantly has anyone recovered? and How? So far none of my docs have been able to “fix it”. Ritalin twice a day to stay awake. and constant naps and resting. It truly sucks!

  • elaine

    I found your post very helpful. My mom is just about to have brain surgery. I want to make her a care package for once she is at home recovering. Something fun for her to open each day. I was thinking some little teas/magazines. What else did you find helped? Was there any natural remedies that you liked? I’m trying to be creative. Anything like “a magic bag” or an essential oils that you found calming. Anything that helped the scaring. Thank you so much for taking the time to share your experiences.

    • cracker10

      One of my favorite things was getting new jammies that were easy to slip over my head & looked nice as you will be in them a lot and often visiting with people that come over. Had brain surgery in June 06 … My scalp still hurts – but the surgery & immediate recovery is not as bad as I or many fear . Good luck to your mom:)

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  • carl pearson

    I loved this blog post. I just had brain tumor removal surgery monday.

  • Faybian

    I got sent this link via a friend. These points are so true, though I didn’t have steroids or anti epileptic meds for long. After complaining to 6 GPs about my headaches over nearly 20 years, I finally had a CT scan that showed a huge grade 1 meningioma. I had open craniotomy 5 years ago and a laparascopic craniotomy 3 years ago. I still have a tiny bit left in my middle ear. I took 6 and 3 months off work respectively, the tiredness was the biggest thing for me.

  • cracker10

    Hi – After reading several post here where many people seem to want more real people’s perspective and/or support for The brain tumor /surgery club , I thought some of these links may be of help – https://braintumoursupportauntym.wordpress.com & http://www.meningiomamommas.com/
    Even though it has been 8 years in June for me , it is still strange and I’m reminded of it everyday. A few thoughts , I live in a small town where I am very well known & at the time of my diagnosis, my kids were 13 & 11. Being a school volunteer . coaching sports, working full time & serving on an elected board created more pressure in the form communicating my situation without scaring a bunch of kids (My son’s friends asked their parent if I was going die and my daughters friends were crying when they heard) It became hard to go anywhere without feeling like people thought I was going to die , or looking at me & wondering whats going on. Some people will ask you questions straight out, some will suddenly ask “how are you FEELING” and many will just look at you and wonder- It can be challenging in the beginning to have to repeat the story & explain whats going on many times a day for weeks /months. Think about the person with a cast & how many times they are asked “what happened” and multiply that times 1000% its daunting especially in the beginning when you are trying to absorb so much and keep it all together.
    Best thing about my diagnosis(if there is such a thing) was it happened right before my Husband, ours kids were heading on vacation. This was a blessing because we were able to deal with the diagnosis first while the Drs tried to determine next steps. By the end of the trip , we had at least scheduled Neurosurgeon apts , more MRI s etc. In a situation where you feel like you have no control it was better to have somewhat of an action plan in place before telling anyone else. It also allowed us explain the situation to our child so they wouldn’t be scared or hear things from others first, “when the “news” broke.
    and to inform our family and friends with a little more detail vs being peppered with question from people meaning well but in the beginning you only have so much information to share.
    I think is important to control the people who in know upon diagnosis, especially if you live in a small community or just know a lot people.
    I hope you find the links helpful and I’ll post occasionally as I have some other thoughts.
    God Bless & Good luck- it is a life altering event

  • James Sherrell

    i had a tumer remover

  • Darlene Pegram

    I Had surgery on 3/4/15. Scary should have been my written across my forehead. I had a grade 1 meningioma around my left optic nerve in the clinoid area where the 2 nerves come together. Found while getting a new prescription for reading glasses. I had come to hate my progressive lens and was having headaches frequently. My field of vision was decreased significantly since my last eye exam the year before. I was sent on for further testing at Wake Forest Baptist Health. The ophthalmologist was wonderful but could not find an “easy” solution fir the problem and an MRI was scheduled within the week. The next week I was promptly seen by my neurosurgeon who explained that this tumor is usually benign and watched but effects were now increasing and stated the need for its removal quickly before the right eye showed effects from its growth. Surgery was scheduled and I think I asked a million questions daily to him or his assistant. Surgery went well. I was told all of the tumor was removed and today I learned of its benign status and grade. Pain was excruciating and tingled along the incision quite frequently. Moving my head made everything move-boy was I thankful for nausea meds and those pain meds. I had a bad panic-type attack in the hospital stay of 5 days. i also had a bad one the day after I came home. Hands and legs went numb, room went spinning and I felt like I couldn’t breathe. I used the number I was given to call in case problems arose at home. They talked my husband and family into calming me down. The worst hospital events to me occurred after the urine catheter was removed because that meant I would need to get up which caused the dizziness and nausea to restart that I would just gotten over. I am still tired-so tired and writing this has taken me forever. My fields of visions in my eyes are weird. They are perceiving everything in different plains. Depth perception has caused more accidents than I can count. Thinking I am grabbing something and just missing, then trying to figure out where that object is, is just frustrating. hearing my heart in my head and its fluids moving is also causing me to sound muffled. I feel like I am yelling and my family can’t hear me. Tomorrow I get staples removed. I hope I can walk into the office. I tried going out today with my wonderful husband but I had to hold onto the cart for dear life and pray I wouldn’t run into anyone like I was running into columns and side displays.
    Keep meds handy! And rest no matter how stupid you feel for doing it. Let people help you. Friends and family are golden as you go through this. I also am a Christian and my spiritual family has been as much or more support. Facing this has not been easy, but at least peace has been enjoyed during this entire new path that I have begun to walk. I know time will help but waiting is not what we do best now in our fast paced society. As Jesus walks with me me and provides support and comfort. I pray for others I see who are experiencing many of my same problems.
    If anyone has any suggestions about how to help my eyes to work together quicker, please let me know. Hopefully, I’ll be able check in again and see how others are going through in their various stages before, during and after surgery, and be helped in my new walk. Lol lol lol -maybe I’ll walk a little straighter also, since that is just as hard to figure out. Now I know just how hard learning to walk is for babies.

  • Marie

    My husband had a brain glioma removed at Huntsman Cancer Institute last week. It has come back Stage 2. This morning, one week later, he woke up in a fog and is wondering when he is going to feel normal again. I found your “20 things to know about brain surgery” and began reading them to him. After #8 he said, “I get it. I don’t like it, but I get it.” And then he went back to sleep. I’ll read him the others later. For a caregiver, your “20 things” has helped me greatly. My job is to be encouraging and supportive, understanding, patient, caring, and helpful. We will get through the cancer treatment and be grateful each day. Thank you for the time you took to write this. You are helping many people.

    • K Klimstra

      Stage 2 is great news (even if having a tumor is terrible)! Being a caregiver is hard. Good luck with your husband’s recovery and don’t forget to take little snippets of time for yourself wherever you can get it.

  • carol

    Hi everyone I had a benign meningioma.removed on 31st December been fine till about 3 weeks ago now I have pain & discomfort does anyone know if this is normal thanks carol

    • kerry

      Hi that shud be normal u ok

    • Darlene Pegram

      It will be ok. Pain and discomfort are very sporadic. They can be lengthy or short lived. I have very sharp pains sporadically along my scar and areas where the tumor was taken from. Moving my head quickly or moving to a standing position causes discomfort or much dizziness. All my discomfort so far( praise the Lord) is helped with Tylenol. Dizziness and nausea are different matters. Please call your doctor for ANYTHING you feel is not natural and discuss with them. I also work in a healthcare environment and I always do this. Pest or not, I want to know what is ok and what is not.

  • Guest

    Please cancel my account

  • Chloe

    I had a benign brain tumour removed 10th December 2014 and I thought I was back to “normal.” I’ve been working full time for the last 9 weeks and last night I went out with new colleagues. This was the first time I had caught public transport by myself after the surgery, headed to a new venue and tried to socialise with relatively new people. I became overwhelmed with the crowded venue, the loud music and the flashing lights. I had to head home at 9:30pm. I thought that working full time as a teacher and feeling “ok” meant that last night wasn’t an insurmountable task. I was wrong. I’m still trying to figure out what I can and can’t cope with. I came across this post today. It made me cry, in public. Thank you.

    • JW

      I had a benign meningioma removed in June 2014…everything went well, felt like a new person straightaway after the operation, totally happy and back to work in 2 months full time. Weird thing was tho, i had panic attacks over silly things, like i always felt in danger of dying, don’t really enjoy clubs at all anymore, i’m only 24.. tried to go to a festival and the fear of something dangerous happening to me when i slept in a tent was too much! Even things like driving on country roads scared me. Trying to force myself to fly again as this is freaking me out too. Nowhere near as bad now, but still very cautious about putting myself in dangerous situations.. everytime i feel something in my head it freaks me out! and its been almost a year now. Sorry i’ve rambled a bit here but basically i know what you mean!

  • Charlotte Bouyssou

    Had a brain tumor removed in 2011. These “20 things” are so real. You can also add a few to the list. 1.You will be able to predict the weather (with the pressure on your head when the rain is coming). 2. New skills/ way of thinking might come. I can actually tell my right from my left now;). 3. People will forget, you won’t. But that’s ok.
    Something I really did not expect: I lost my standard American accent. Being born and raised in France, an heavy French accent came back instead. Strange but real!

  • Christina

    So glad I found this page. I had a lemon sized meningioma removed from the back left side of my brain (visual cortex) 8 weeks ago in Los Angeles. My symptoms were loss of peripheral vision in both eyes in the bottom right hand side. I did regain some vision post surgery and I am so grateful that my tumor was benign and so grateful for the care I received however my post op migraines are unbearable. Has anyone else experienced intense migraines after surgery. I have already been back to the ER once and I can imagine going again. I had a CT scan done when in the ER to make sure it wasn’t a bleed or infection, and it wasn’t. The neurosurgeon and ER doc both agreed these migraines might be part of my post op existence. I am currently suffering from my 4th insane migraine which causes vomiting and chills and I can not make the pain stop with any number of drugs. Any help or support would be such a help. I love my family but no one understands what this experience is like. Because I seem like the old me, I think people are not taking my emotional instability and horrible pain quite seriously. thank you all for having written your stories here. I need this type of forum. Be well.

    • Lino Xuereb

      Chistina, I had my wife operated 3 times at INI Hannover Germany by Prof.dr.med Samii. 3 times in 11 months. Every time the aggressive meningioma is removed completely with a successful operation. Yet it comes back again. After each operation she walks and talks perfectly. No Pain. Only this time the right palm dextirity needs more time to heal her grip. Every time we have to stay in hospital for 4 weeks before we can fly to Malta. Now we are starting SUNITINIB a trial drug chemo drug for meningioma atypical. Very expensive in USA 13900 usd for one cycle for 28 days on 14 days off. In Malta we can get them for 6000 usd. I understand you perfectoy and I wish you so much luck. If I can be of any help at all even by comunicating please do so we are in the same boat.
      Lino Xuereb Malta.

  • Me

    My brain tumor was removed 2.5 months ago in Las Vegas. It was about 2 inches. I was using steroids and drugs to avoids seizures before surgery. I had abnormal appetite and no feeling of food taste and smell taste. That was terrible. I also got a lot of acne, but when I was using medicine (doctor prescribed 2 months ago before surgery to prepare me for it), I stopped to sleep almost at all, just 3-4 hours a day, and that continued more than 1 month! My memory became just incredible and so sharp, I was getting a lot of ideas for my future (I was still not knowing, if my surgery will be successful), but became a little aggressive in my speech (not a violent). I was not understanding how I can survive, if I sleep so little. It is normal side effect, when using steroids. I also started loose muscles in the legs, as I was not even able to stand up from a chair or a car without a help, and I was falling on the ground sometimes and laying down until someone help to get me up. I also spent a lot of weeks in hospital and rehab, but now I am already able to do almost everything by myself. The memory is good, but no more that sharp anymore.

  • Roni

    Those 20 things are so real! So true! So helpful! Thank you! I was diagnosed (meningioma) with 5 tumors (yes 5) after months of headaches and other symptoms. It was in the middle of November 2014. I was shocked but relived as well. I thought about my husband and boys and that was the only thing that helped me that moment when they told me that I have five tumors. I was transferred immediately from the imaging center which is also an urgent care facility with an ambulance to the hospital. I was very positive the all time even with everything I went through and had so much support from family, friends and medical staff. They removed 3 tumors, the biggest one was 4.8 cm, and left 2 smaller tumors in. After the surgery I had blood clots and stayed 16 days in the ICU. Also I had occupetionl therapy, speech therapy and physical therapy through my hospitalization. I went home and started my recovery which went well. But after 2 weeks I started developing a fever and I had to go to the ER and 3 hours later I had my second brain surgery to clean an infection. I spent 8 more days in the ICU and surgical unit.. I had to take antibiotics through a Picc line which also caused me to clot. I went home with an IV line and had to get a very strong antibiotics through my angry veins by my sweet husband. I had to go every other day to the infection and diseas clinic to change my IV line because my veins did not work anymore. I am a month and a half from the last day of my antibiotics, I am two weeks after I withdrawn from my pain killers ( I am still on seizure meds tho). I feel generally good most days but Today I came back to read this page because this page is awesome and remind me that I am still recovering and that it takes time and that it is not easy.
    I wish everyone health!

  • Zoe jamieson

    Cannot not thank you enough for this post my husband goes on in two weeks to have his tumour removed being so positive has left me a but unprepared! This has helped to arm me with what to expect and how to help him I have shared it will all his family and he has read it too! Knowing what’s normal and what isn’t will help us all to cope after

    Thanks eternally for this!!

    • Jennifer Hales

      My biggest tip would be to always have someone with him 24*7 at the hospital. Unless he is sleeping a lot. I didn’t sleep a wink and having a family member there with me was comforting.

      • Julian

        So true. I woke up a few hours after my brain surgery and started thinking I was dead or in a dream. I kept having to use the restroom and only remember seeing one nurse and she wouldn’t even respond to what I was saying really. I was trying to get validation that it was all ‘real’ so I just wanted to talk to someone and get a response. The only person that would respond to me was some Jamaican nurse. This all happened at the middle of the night so no family members and none were responding to my texts (yes, I managed to find my phone, grab it, and text, but mostly call my family.). Overall it was a weird night.

  • Jamie

    My dad had a baseball size tumor removed August 2014. They initially thought the tumor was the size of a golf ball and scheduled the surgery for 6 hours. Well 12 hours later he finally came out of surgery. He was in icu for 2 weeks. During his icu stay they completed a tracheotomy, put in filters to catch blood clots, feeding tube, and chest tube for a partially collapsed lung. Since he was having seizures and the swelling was so deep, they decided to keep him in a medically induced coma for 10 days. When he woke up he was a quadriplegic. They said he developed something called icu neurothpy? Basically he lost all muscle mass and forgot how to to move. He went to long term care for 6 months and has regained full movement in his upper body. He has 100% feeling in his legs, but he still has very little movemnet in his legs and can only stand at this point. They expect him to make a full recovery and be able to walk again but it could take months or even years. We’re still unclear as to what went wrong.

  • Laura Calautti

    I had a benign tumor removed on Jan. 1st of this year. I am dealing with a lot of issues STILL…such as mood swings, I don’t feel normal and I am VERY sad. someone PLEASE tell me if this is normal???

    • tina

      it is very normal they say its caused from the steroids my mom went through brain surgery in Nov 2015 went well hers was cancer at 83 she is pulling through like a trooper up and at it she is doing a experiment treatment of kemo Rad and injections into removed and replanted for immune system to fight it MRI cancer gone, but now has a little swelling in brain area not sure what to think hopefully minor issue mood swings will get better in time she had lyphnode removed and put back in bodyaccepts cause its her own awsomebut the swelling after 5 months is concerning any info on this

    • stacy

      Hi laura i had an acoustic neuroma brain tumor removed november 7, 2014 i also almost 6 months out have lots of issues. I also wonder when i will feel normal again… my facial parslysis is getting better so to people i look soooo much better but inside i dont feel that way.. i get sad and it sometimes seems so tiring…i keep pushing myself and i think that after brain surgery this is normal…..i just had no idea the recovery time was so long…i have heard people say they felt normal again in about a year… so i am looking forward to normal again!! I know it is coming!!! If you have been on a lot of steroids as i have i think it contributes to the moodiness and sadness… i just keep reminding myself i am still here and i know the Lord rescued me. I am thankful! i just try to keep moving!! all that to say i understand how you are feeling and i do think it is normal after Brain surgery.. hope things get better for you very soon!

    • Roger Darden

      Me too. Just remember that we are an extremely rare group of people who survive as we do. Even 25 years ago it would have been totally different. My primary doctor is very, very good and compassionate and it was only last week that she told me that stress and mood swings can be a major side effect; those of us recovering WILL usually have it occur. I was told to MELLOW OUT. Laura, just the fact that you can figure out how to be on here is a blessing. And I think we all, those of us commenting here, all share the same feelings. We are survivors, all of us. Remember that..when compared to those with broken fingers? we are unique..

    • Felicia

      You need an anti-depressant. I take lexapro it helps….

  • Michele Crupe

    I had my surgery 02/04/15 I am to go back to work next week. I lost movement of my right eyebrow, my memory sucks now, and I still have dizziness at times. Over all its an adjustment, but I survived. This blog helped me tons! Good luck to all of you.

  • Karen Zarnowski

    I had a brain tumor removed 2 years ago. I never grieved for myself. I went back to work way too soon. You have to take care of yourself.

    • Bre

      HI hope ur well how soon did u go bk? I’m 7months post op an just went bk 3days feel miserable exhausted an headaches returned.like zombie on days off.:-(

      • Karen Zarnowski

        Bre, I am better, but forever changed. It is traumatic surgery, and no one understands what we went through. It is truly one day at a time !

    • Felicia


  • Beth Darling

    I am a week and 2 days post op. I can’t get used to the weird pressure I felt around my teeth and gums.

    • Socrates

      Ah, hah! You have just answered a question. I coudn’t not imagine why my wife kept rubbing her teeth and gums. Problem understood. Thank you!


    my wife who looked and act 55 .but 76.
    had seizure .a week before thanksgiving.
    she had meningioma one removed . april 4 it was a 10hr surgery.
    she has up and downs. headaches chills and shaky.
    the doc believes it’s coming off steroids.
    some day she’s a 10 .next day a 5.
    for the headaches she taking extra strength Tylenol 2 every 6 hrs.
    it seems it not enough . she getting a new drug.
    the other one she took made her throw up.
    4 years ago she had a hip replacement . 8 weeks to the day she did her 5k walk
    she went in strong . i hope she comes through the same.
    which she wins in her age category.
    it’s a long haul.
    it’s great to read some of the same problems.
    i guess we are not a lone.

  • destiny

    I had my brain tumor removed 2 years ago when I was 12 I’m 14 now my tumor was right behind my left ear and about the size of a golf ball.If you have a brain tumor and need surgery read this list because this is exactly what happend.Also,make sure not to push yourself I tried,to play volleyball after 2 months of having my surgery and I got so dizzy I fell on the ground.So even though it’s hard take your time and recover.

    • Roger Darden

      Mine was right there too, behind left eye, to directly above left ear, and was the same size as well. I had some of the same issues, especially the dizziness, and it took months to go away. The dizziness is rare now, but the frustrating part is the aphasia. Been almost a year, and slow to go away

    • Saffy

      Hi there! Can I ask u if u still have headaches after 2 years of brain surgery? I’m just afraid of my son’s condition. He was operated due to an arachnoid cyst removal, the saddest part is he already hav seizures which sometimes almost everyday.

      • Brooke Tolan

        I had a craniopharyngioma, I had surgery 20 yrs. ago, unfortunately the headaches never go away, at least for me they haven’t, it’s been a struggle because I was told they would be better after surgery but they are not. Sorry to be the bearer…

        • Alexis Tran

          UGH. please give me your contact info or something. I had surgery 9 or 10 years ago for epilepsy. IVE HAD HEADACHES SINCE. It’s annoyinggg. I Have Questions! lol please let me know if you don’t mind ASAP. D;;

        • Jean802

          It has been over 3yrs for me. Has helped the epilepsy, but the headaches are as bad as ever.

      • Filipe Figueiredo

        2.5 years ago, grade 2 astrocytoma above my right eye. The heavy, nausea inducing migraines have subsided, and now I only experience dull pain headaches, that can last for days.

  • Socrates

    Amen, amen, and another amen. My wife had surgery for a metastatic
    colo-rectal cancer that was 4 cm by 7cm. She was home only a couple of
    days before she had a seizure. I had never seen one before, but had
    enough sense to call emergency and get her an ambulance (took less than 3
    minutes for them to get here — thank you). That was several weeks ago.

    Now, spaced out is exactly the word I would use. She does know
    me, but that is about as far as it goes. She can’t (or won’t) eat,
    doesn’t take her meds, and has a dozen other behaviors that get stranger
    and stranger. Tomorrow, I am bringing her mango ice cream. Before
    surgery, she hated mangoes. After, she couldn’t get enough. So, we are
    hoping to get something going that way.

    Her son is a nurse, and I
    turn to him for medical stuff I don’t really understand. Her sister is a
    vet, who tries to get me to understand also. She has a hard time
    remembering anything, or following a thread. Her; “I can see…” Me:
    “Your eyes are closed. That might have something to do with it.” Her:
    “Oh …”

    My family and most of hers is halfway around the world.
    I spend my days in the hospital, and my nights feeding animals and
    trying to keep house so I can live in the place. Believe me, these days,
    that isn’t what you call a high standard. I eat TV dinners because if I
    take time to cook, something else doesn’t get done. We tried hiring a
    cleaner, but that was even worse.

    I haunted the internet, trying
    to find something so I could make sense out of it all. This is the ONLY
    place that was real and not vague generalities and
    kind of drivel.

    I *DO* understand we are the beginning of a
    process, but I will not give up, and I will not give way, and I will
    have my wife back. No ifs, ands, or buts. And I will take all the help I
    can get and more than I can’t get if I have to.

    Thank you, thank you, thank you all. For the first time in weeks I feels like I am not the only one.

  • Jessica

    Hello u i am 36 i had a 5cm meningioma removed on april 8th 2015. It was is the posteraria fossa part of the brain on right side. Surg was eight hours and seven days in icu for the drainage. Never took my pain meds just Tylenol when i came out if hospital. The steriods are out of my system thank god. I just dont understand why my ears still feel clogged and i feel congested. I feel like i have so much mucas in my throat. I really cant taste alot of food and i dont understand why i am so congested. Does anyone have this? Does your head feel like its a pool of water

    • Jennifer Hales

      My head feels like a pool of water. But I can taste food. At my Dr apt I asked him about the pool of water and said its normal. That the put a bunch of water in your head to wash it out.

    • Jackie

      Hi Jessica, I am 46 years old and had a meningioma removed from the left side of the brain almost 2yrs ago, which had positioned itself on my balance and hearing nerve. This resulted in the tumor being removed but not without permanently destroying my balance and hearing to my left side. Your comment about “head feeling like a pool of water”, this is a feeling I have always had since surgery, almost like the head feeling heavy along with just getting off a rollercoaster! I have been told by my specialist this may never come right, however have been doing some eye exercises which were given to me by the balance centre, in hope that this may help. It has taken along time for my balance to get better, and some days it is worse, but with a 2yr old lil boy and being on my own I focus on him and the things I can do well. This hasn’t helped with your question, but I hope you get the answers your looking for and get better soon.

  • Jennifer Hales

    I had my surgery 2 weeks ago. Thanks for writing this it makes me feel normal when a crazy thing happened to me. I hallucinated for three days coming off the meds. It was awful. III didn’t have time to mentally prepare for surgery I went in for an MRI and was immediately admitted for emergency surgery. My tumor was the size of a small apple. Make sure to have someone else in charge of meds. I can remember something from years ago better than 5 minutes ago.

  • Jerry

    I am a survivor of a brain tumor, cured through Chemo-Therapy as well as Proton beam Radiation Therapy, and I fully agree with what you have posted. I especially smiled at number 20. I even said “Lucky me…I still do.” When you said “The petty things that bug you will fall away, and you’ll just be really grateful to be alive. Enjoy that feeling for as long as you can.”
    God Bless you sista’

    • Jennifer Hales

      Jerry I am 5 weeks out and pray it doesn’t go away.

    • Margie Bou

      Just had a meningioma extracted, thanx so much, it was a relieve reading what someone else went through

      • Anthony

        Can you tell me where it was in your brain…unfortunately I have the same thing and so scared of the outcome

      • Anthony

        Can you tell me where your tumor was in your head and how do you feel now

    • Anthony

      Can you tell me how big was your tumer and where was it….how did they know it was cancer without a biopsy or did you have one

  • Jitendra Kumar

    My cousin have had surgery on Monday, He is 12 year old. But he is still in anesthesia. Is it normal or what, because doctor is not saying anything to us ? Please reply someone.

  • Raquel Falcon

    On April 7 of this year I had a successful surgery to remove a meningioma tumor that was in the general area of the speech part of my brain. During this time, I experienced frustration with communication as I was unable to speak without getting confused or losing my train of thought. People that didn’t know me (some of the nurses) were finishing my sentences and were occasionally wrong in their assumptions, which was part of the frustration.

    My husband came across this blog the day when we were told in ER what they suspected it was, and read all the items through to me the night before my operation, as I was unable to read them from my iPhone. It was a great comfort and all the things that applied to me came out to be true, so thanks for sharing your experience with the world. I also plan on writing a book about my experience. How could one not?

    They sent me home April 10 after making sure I’d do well at home, and since then I’ve been experiencing the slow return of my tastes, a ringing in my head, and today I’m still a little wobbly though I just got off the meds this past Thursday (though last night I did take my Norco). I’m hoping once the meds are out of my system I’ll be clear headed. Maybe someone can shed some light on these things?

    Thanks to all of you for your stories – I will check occasionally to find new ones and maybe someone to share my experiences with.

    • Roger Darden

      I had the same problem, and it’s slowly going away-it’s called Wernicke’s Aphasia(not being able to say a word we want to use&speech, etc), and I know, it IS FRUSTRATING. There are still some slight issues, and thankfully it’s easier to write things because that way we do not have to have a conversation pause as we “search” for a word; we know what we are trying to say but the actual word is at the “tip of our tongue”! But it does usually fade, and mine was pretty fast as far as healing.

      • Raquel Falcon

        Thanks for sharing your experience with me, Roger.

        The problem went away during the early part of my recovery, but now it seems to have returned. I was doing well with conversations the first 2 weeks back but then it all started to fade again – perhaps it’s because I was in a quiet environment (my home) and now I’m back at work and reconnected to all things electronically stimulating, as in the internet, emails, texts, etc.

        • Roger Darden

          I had the same problem-and still am. Looonng story, but I was gone, fighting for medical care for 7 years. There was a lot of computer tech things that came that I didn’t know of, and right when I started learning, I had surgery. So at Shasta College I am lucky, as I can take ADAP classes to re-learn things. But I wasn’t a computer geek to begin with. I will have to have this one, my HP cleared; cookies?? That’s what I ate at my grandmothers. Recovery is amazing, I hit the dean’s list, and pulled all A & B grades, in English, etc, addiction counseling, but when it comes down to computers I am lost. My Dr is incredible and pointed out that when we have as much of the L. Paratial lobe removed we are all different. I also have computer problems tho. I really hope I can recover because they are a fact of life, and when I transfer to Simpson, will most likely be taking accelerated classes online as well as actual on campus units, and even my cellphone has more computer use than telephone use..there is frustration of course, but anyhow. Yes, we usually will have those issues, and recovery can happen, we have to keep at it. I think the short term memory is the most frustrating, I remember thinds from 45 years ago, but not 6 months ago……take care Ma’am…

        • Roger Darden

          Sorry, forgot to add, make sure there are at least CT scans done every 3 months, for a year. I found out there was a hematoma that took almost 4 months to stop, and my doc was ready to refer back to Sac. for a stent, thank god it stopped. Just take 1 day at a time Raquel-yer back to work, and that shows you are recovering..mine has been so long, but it is happening-that’s another story. Take care! 😀

        • Roger Darden

          Heres the short term memory. I fergot to mention driving-I am also at a loss for words, because of the long standing issues from seizures, I cannot drive for at least 5 years, and that is not guaranteed, up to Courts. My 1st seizure was 10 yrs ago, and had a very bad accident, almost killed, severed aorta, etc, and that’s when the CT found th tumor, and an MRI with ink confirmed. But I have driven since I was 14 years old, and even did it out of sheer boredom. LOVE IT..So, if you do have a shot at driving again, smile! That’s good stuff, and very few of us ever get to. I can actually drive, and rode my brothers Harley just 30 minutes ago out here on a back rd, but don’t think I have a good shot at it legally. Never know tho, but if ya have a chance, remember its great. After this medical stuff we all share, we are a rare breed, and when we can be happy and smile, we always feel better!

  • Tracy

    i had a benign tumor pressing on my optic nerve removed about five weeks ago. I went back to work three weeks after surgery and probably should have waited one more week. I am doong much better, but so tired. I was put on anti-seizure meds, but was already told i could go off so i am weaning myself off. I am so scared though that I am going to have a seizure though be ause everything i read is about people taking these meds for longer. Did anyone else stop so soon?

  • Pamela

    Hi my name is Pamela and I had a brain shunt Ineeded 6 days ago. One of the most difficult things for me is sleeping. Does anyone have suggestions on positions that don’t result in excruciating headaches? ??

    • Deb2theC

      I would suggest as a person who underwent a craniotomy almost one year ago a product called Melatonin Plus made by the manufacturer Schiff. It contains; in addition to the 3 mg of Melatonin which I took a few month after my surgery w/o much success in helping me sleep, the added ingredient Theanine which is one of the many B vitamins. and it induces relaxation and works much better than 6! mg of plain Melatonin. I am taking this w/my Primary’s approval (always check with your Dr before adding anything new). I continue to suffer w/headache daily, sleeplessness, nausea also daily. In addition I find sleeping on my side with a pillow (a long one to wrap my arms and legs on each side of) the most comfortable, for me. I may also occasionally switch to flat on my back during the night for brief periods.

    • Felicia

      Benadryl or valium???

  • Jimmy Ference

    I am a 20 year old survivor of a rare brain tumor called Juvenile pilocytic astrocytoma (JPA). It was removed on May 1st, 2015 (coincidentally the start of brain tumor awarenes month) its only been a week since ive had it taken out. I was told by my Doctor every brain tumor is going to be slightly different. After reading this article i was relieved to find there more similarities then you would think.

  • Jimmy Ference

    I am a 20 year old survivor of a rare brain tumor called Juvenile pilocytic astrocytoma (JPA). It was removed on May 1st, 2015 (coincidentally this was the start of brain tumor awareness month) its only been a week since ive had it taken out. I was told by my Doctor every brain tumor is going to be slightly different. After reading this article i was relieved to find that there are more similarities then you would think.

  • Jimmy Ference

    I am a 20 year old survivor of a rare brain tumor called Juvenile pilocytic astrocytoma (JPA). It was removed on May 1st, 2015 (coincidentally this was the start of brain tumor awareness month) its only been a week since ive had it taken out. I was told by my Doctor every brain tumor is going to be slightly different. After reading this article i was relieved to find that there are more similarities then you would think. Doctors and technology have come a long way, stay strong and positive all the time!

  • Jeff Brown

    Great post! I had a craniotomy to remove a tumor at the end of Feb ’15. In my case I was amazed at how #4 did NOT happen – there was almost no pain in my case. Only immediately afterwards from where the stabilizers had been pressing. #8, I enjoyed every dose of my steroids and the ridiculous appetite that came along with it. Which just made #7 even worse, since they wouldn’t discharge me until that happened! And yeah, #13 is no lie. I even threatened the recovery nurses. “I just went thru brain surgery and didn’t turn into a vegetable. Please get me some gingerale or else we’re gonna have a problem”

  • Rose Jacob

    It is now 4 years out from my husband’s brain stem tumor. He has a great deal of trouble walking, due to a non-stop burning sensation in one leg. SO HE TOOK UP BIKE RIDING!
    Yup. Started out with a lot of wobble and weeble, thought I should get him training wheels! The first year he did a 25 mile biking event. the next he did 38 miles. He now bikes 30 miles 2x a week. This weekend he will be doing a METRIC CENTURY for his 65th birthday. Oh, did I mention that he lost the use of one hand due to his surgery? YUP! Only uses one set of brakes… he TAPES HIS “Bad” HAND to the handle bar!
    Not everyone will be “the same” after brain surgery. Don’t dwell on what you can no longer do. Realize that, no matter what your doctor or therapist says, you won’t be back to “normal.” THEN find the things you CAN do and do them passionately. And finally, take a good friend with you when you get your hair cut or styled. Your friend can show the stylist or barber EXACTLY where the HOLES IN YOUR HEAD are!

    • Raquel Falcon

      I totally agree – my surgeon, brilliant as she was, didn’t really prepare me for what came after (probably because everyone’s situation is different), so lucky thing my husband came across this blog the day I was in ER and they told me it was a brain tumor.

      • Rose Jacob

        I think the day it all sunk in was the day they discharged him from PT and OT, since there were not going to be any improvements on the horizon! Bummer. We went home and just said, “NOW WHAT?” Yoga helped a lot. How long has it been since your surgery?

        • Raquel Falcon

          A little over one month. I’m doing pretty well, and have returned to work on a part-time basis. Driving is still beyond me, though. But I have arranged rides through my co-workers and that helps a lot.

          • Zindagy Zinda Raho

            Please I need help .I want to see how people feel .they still alive or not please talk to me how u feeling

    • Michelle Pineda

      I agree, I had emergency brain surgery, nothing prepares you for the headaches

      • Joe

        Do you still have headaches? I’m at 1 year and 4 months since my last surgery and I still have some headaches. I guess it’s normal. That’s what they tell me.

        • Filipe Figueiredo

          Fucking migraines that made me feel like I wanted to shoot myself in the head. I’m better with those now, as they are very infrequent these days.
          Now I have these dull pain headaches that can last for days if I don’t take any medication. It feels weird to wake up during the night with a headache, but they’re not too strong. I had surgery on January 2015.

    • Laura Kay

      I couldn’t agree more! Being told at the age of 17 that you’ve got to have your head opened isn’t the greatest news… I was so confused and scared, as nothing was fully explained to me in ways that I’d understand! It should definitely be handed out to patients!

    • Anthony

      Anyone who has a tumor and is looking for a second opinion please contact the barrows institute of Neurologists….It’s in Phoenix Arizona and you can go on there website and give them your information and within a week you will have every answer you are looking for…pat if your reading this…thank you soooo much for the information on this place…you are an angel for calling me and I will never forget what you did and when I get my response back from them …I’ll keep you updated…again I can’t thank you enough

      • Zindagy Zinda Raho

        I had my brain tumor removal surgery April 2016 and I am still trying to recover. I have many panic attacks and two seizures since the surgery. My ears became really sensitive that I can’t handle even small sounds. I want to talk to people who have also been through this. Right now I don’t know anyone and I could use the support. Please email me at pak_bibi_lucky@yahoo.com.
        Thank you,my cell num 4434843391

    • Robert Haight

      Thank you! And agree!

      So I’m four months post op after Chiari decompression surgery and woah what a ride. About 3 good days for 3 bad and one toss up. Trying to feel “normal” is so hard. Feel like an alien. I hear it can take years, so here we go.

      • Kim Folnsbee

        I so understand what you are saying. My surgery was 10 months ago. I amazed my surgeon with my recovery I truly Wessex blessed. I have memory issues don’t remember the last 8 years or so. If I see photo will help some. I also have the feeling you talked about trying to feel normal. I never feel like things just happened I remember but feels like an old memory, just to hard to explain so people can understand. So I know things will get better once I accept my brain will recover at its own pace. A small portion of my brain did not survive so I have to wait and see.

        • Esta Blount

          I had surgery,raditiom with chemo pills for a glioma grade 3 8 months ago. I am feeling back to normal but I still haven,t been released to drive. the loss of freedom has been the hardest thingbut my last 2 mri scans have been clear!


      Yes I have to agree, Rose. It’s been a long time since my surgery, after an accident, but seems things haven’t changed much. I’m in the UK though. Don’t know where you are from.
      When I was released from hospital, which I very much wanted, I suddenly felt so vulnerable. So much so that I would have preferred to go back in to hospital!
      I was totally unprepared and anxious because I didn’t understand the symptoms.
      Experienced most of the above, as well as terrible vertigo, night-blindness and an extremely painful back spasm two days after release.
      The good news is we do recover, mostly. I still get odd headaches around the horseshoe scar, and have had Tinnitus since.
      Great that there’s forums such as this to help prepare people, and help sooth the fears.

  • CVMA Infidel

    Good article, thanks! I had a crainiotomy almost two weeks ago to remove a malignant tumor at the top of my sinus in the area of the Olfactory Nerve. No idea how long it was in there and I probably still wouldn’t know about it had I not decided to see my ENT doc about my very limited sense of smell and blockage in my right nostril. Turns out it was a rare tumor known as Olfactory Neuroblastoma. I’m glad to have it out now and will be starting radiation or a combination of therapies in the near future to hopefully keep anything from growing back.

    I’m two days shy of being two weeks post-op and my biggest gripes are dry mouth and mild discomfort /swelling around my eye. I was pretty blessed to wake up in the ICU and feel pretty much normal. I’m taking it a day at a time and look forward to being able to get back out on the motorcycle for some road trips! Take care everyone and best wishes.


  • Humanity

    It was most humbling to read the post and the comments. Thank you.

    My husband had a craniotomy for chronic bilateral collection evacuation. Apparently, he had banged his head hard a couple of times and forgotten all about it, till he started getting headaches.

    It took two months to finally insist the doctor order an MRI. The doc wanted my husband to see the neurologist even after the MRI, who were solid booked for at least 4 weeks. Thank God for google, I looked up chronic bilateral collections in google and knew my husbanded needed surgery. Within 5 days after the MRI, he felt very sick and I took him to the ER, where they did the surgery the next morning on 5/2/15.

    Surgery went well. He is recovering, but gets headache after 5 to 20 minutes when he s in upright position. He takes fioreset to manage the pain. He is also on anit-seizure Keppra, and Topamate

    Any suggestions to help him through his recovery will be much appreciated.

    BTW, I give him a teaspoon of organic extra virgin coconut oil 3 to 4 times a day. I also give him turmeric 1/2 tea spoon in a bit of water twice a day. Turmeric is good for healing wounds and fights inflammation. I think the natural products seem to be helping him.

    Wish all the patients the best with their recovery and the care takers to stay steadfast, compassionate, and understanding in the journey. Support of loved ones is more than half the cure. But the will to prioritize health is the most important factors to go through the trying times.

    Hang in there, no matter what!

    • Humanity

      Please note turmeric is a blood thinner. So consult your physician.

  • Memory Luther

    I had my first brain tumor removed when I was 19. I’ll be 29 this October. This past year I got sick and was in the hospital for 5 months and during that time I had an MRI of my brain and I it showed that I have 3 new brain tumors. This past week I went in for my six month MRI to check for growth and turns out 1 out of the 3 has grown 25-35% in the last 6 months so I’ll be having my second brain surgery in the next couple of weeks, I’ll still have 2 brain tumors but the plan is to let them be until they start growing then we will do more surgery, so here’s to my second brain surgery and knowing only in time will I have to have 2 more brain surgeries. … But hey, such is life. ……

    • Jennifer Hales

      Just wanted to say thank you for posting this. I am thinking of you! You can do hard things! You’ve already proven that!

    • Merry Meet you beautiful soul!! You have just inspired me to tears. It is not that I am afraid of my upcoming surgery, quite the contrary….it is the possibility of forgetting those I love and been also been unable to see. There should be a non-profit org.for getting pre-brain surg. Patients & their families together for a visit. I haven’t seen my little sister since she was 3 (nearly 26 years) and nearly 20 since my father…..#sigh…

      Helps reading all your stories btw!!


  • Suzi

    4 days out of surgery, thanks for the info

  • Jennifer Hales

    Interesting how we are all different. I didn’t have any pain at all. Don’t get me wrong it was wretched. I felt somewhere between amplifier speakers playing heavy metal, and a jelly fish and Violet from a willow Wonka (when she was being wheeled away.). If they told me touch that and you will die! I HAD to touch it! Did anyone else hallucinate? I was shocked no one mentioned it. The hospital was on fire and the nurses were trying to kill me! And the soap dispensers were aliens! I was convinced that my skull was overlapping. And it was years down the road and I was in a mental hospital and no one would be honest with me about where I was. I have some fun stories. Thoughts pop my head and disappear as fast as they came. My head never stops itching! And I walk like a 96 year old drunk man with a broken leg! Every day is a blessing.

    • C B

      I hallucinated. Everyone died around me on the ward and I momentarily found myself looking at corpses, before they all came back to life again. Also, the walls were talking to me at one point. I was also convinced that the nurses were part of some govt conspiracy, and that some global hacking conglomerate had managed to hack into my brain. I spoke French – a lot, but that is because am/was bilingual anyway, and even to this day, a year and half on from the operation, there are times when French comes more easily to me than English. I also was frightened; thought I was entirely sane and everyone else had it in for me: I thought I would end up being locked up, for years, in some mental asylum or a hospital, like the mad woman in Jane Eyre, and so made an attempt to break out of the hospital, followed, naturally, by a coterie of security guards, nurses, junior doctors and the consultant. But….I am lucky, because I came through it; the mental and the physical trauma, and as you say, every day is a blessing.

      • Felicia

        I had that!!

      • Doug Hart

        This! So much this. You name it i could hallucinate it. My wife works for United Health care and we had her insurance. I just KNEW I didn’t really need the surgery and they were using me as a way to scam cash from her company. A doctors ID badge was dangling in my face and the picture morphed into a guy she works with which was proof of them having an affair. I thought I was in our garage for a while and my wife had killed a little old couple that walk their grandchildren down our street and she had them attached to ropes and pulleys and they were rising and falling in time with the IV pump which happened to contain a small demon inside growling at me. I thought the leg massagers that are supposed to keep you from getting a DVT (nice try I got one anyway and had a filter installed) were demons under the bed reaching up to pull me down to them. It was hell at first but I am still alive and kicking.

      • Doug Hart

        I also spent about a day communicating telepathically with a clock next to my bed. It knew me better than any of the staff did.

      • Filipe Figueiredo

        I dreamed or hallucinated that I woke up during surgery. Can’t really be sure when that happened though.. if it was during surgery or right after, since the anesthesia just messed me up. Worst hangover of my life.
        I even asked my surgeon if I had woken up during surgery, and she told me no.

    • Bev

      My husband had a metastized tumor removed yesterday. It was at rear or head and was creating pressure and partial blindness in left eye. Anyway, all went well but he is now hallucinating…not driving. Did your hallucinations disappear on their own?

    • Alexis Tran

      This is fucking GREAT! I wish I had that happen.. lmfao. I just saw monsters and ghosts coming up from the ground trying to pull me down with them through the cracks. D; When they say you sleep with both your legs in your covers because If only one leg is out, you would think something would come up to grab your exposed leg. YUPP. I felt that. I snuggled in my blankets and had pillows protecting me.

  • Kr

    Thank you for addressing this with much needed humor! I had surgery four months ago due to a subdural hematoma. I agree with your list and want to add a few points:

    1.Even if the recovery curve improves and it is in the right direction some days can be surprisingly bad. Do not panic, just take it extra easy/slow for a few days.

    2. Background noises and multitasking are immediate and definite headache triggers. Surgery has forced me to “slow down” my life and I am so grateful to enjoy things more now. Surprisingly, my slowing down has only made me more efficient as I now multitask less and do not occupy myself with non-sense busywork.

    3. Motion sickness in cars is serious business.

    4. I sometimes get tongue-tied and switch out words for others.

    5. ALL my senses are extremely sensitive, which only emphasizes that we really are super humans.

    6. Come to terms that headaches will likely be a part of my life (long term) and that is ok because as #20 states…..I am lucky to be alive.

    Good luck and a speedy recovery to all!

    • Felicia


  • Socrates

    Several months ago, my wife had an operation to remove a 4cm by 7cm
    metastatic colo-rectal cancer that was on broca’s area. She was home for
    about two weeks, and then collapsed. No trace of infarct, stroke, or
    anything else that might have caused it. Since that time, she has mostly
    been asleep. When awake (or someone awakens her, which can easily be
    done usually) she is conscious and aware of her surroundings. Her speech
    is bad, but can be understood. (e.g., she woke up, said “I want to go
    home” and went back to sleep. ) She is aware of pain, when it exists,
    and has decent long term memory, though her short term memory barely
    exists. Since is asleep so much of the time, they need to feed her through a naso-gastric tube.

    Can anyone give me even a guess as to what is going on?
    Please, if you put something here, let me (exuyangi at gmail dot com ) know, or just copy it to me. Thank you

  • ruth

    Thank you . I had patuitory sirugy 5 weeks ago , I was wandering when I will get my normal life back 🙁 ? But I know everybody its different hope you friend its doing good ! Very nice of you to write this to your friend .sweet 🙂

  • Robin Conrad

    I had my 8th surgery in december 8th 2014, im still in so much pain. Im losing my mind. The drs told me it would be a year before i felt better. 8 surgeries in 6 months is a lot, also had meningitis in the middle of everything. ..im going crazy…i wish you all the best.

  • Marie

    Thank you! I just went through my 3rd surgery and it doesn’t make it any easier

  • Vicente Xavi

    Your post was very helpful. Thank you. My step father was diagnosed with a brain tumor a few days ago on the back right side & is undergoing surgery tomorrow morning. It couldn’t have happen at a worst time. He’s 58 & supported my mother also is the only driver meaning I feel I need to move in and help for now. My only fear is not being able to handle or take care of him well.
    They also said he will need radiation therapy mon-fri to get rid of anything left. Not sure if they found cancer, but mother told me to expect him not be normal, with likely speech problems & possible paralysis from which the surgeon’s told her. I’m just praying he will be able to handle what he has ahead of him, cause his mind is already affected to which he really doesn’t seem to understand how serious of a surgery He’s going to be having along with the long recovery. He’s very healthy and has no heart complications, so I hope post surgery is better than what the Doctors/surgeons predict.

  • melissa akin

    I have a question..,. Is it normal to lose eyesight for a few minutes? I had surgery 2 weeks ago and tonight I was just sitting there and suddenly my right eye went blind.

    • Mathew Stewart

      Happened to me multiple times. I was also cross eyed often as well (but I think that was the chemo). They hit or cut something during my last “awake” surgery. Blinded me during the surgery, and was amazingly painful. Shooting pains down the cranial ridge also blind me for a second or so when they happen.

      Don’t bother getting your eyes checked until after all of your treatments are over and you are as recovered as you can be. Your vision may change often until then.

      And ya, the being “back to normal” is all bunk. You never will be, but will adapt and adjust. Takes so much time, inner strength, hope, family, and real friends to actually get through this stuff.

      So you are at about 4 weeks out right now, expect many more months before weird random stuff isn’t as… weird. Depending on how invasive the surgery was and how good your surgeon is of course.

  • Raquel Falcon

    So when I came out of surgery, there were two X’s in pen on the top of my feet. Anyone know what that’s about?

    • Marsha Lewis

      To check your pulse.

      • Raquel Falcon

        No kidding. I didn’t know that was an area for pulse checking. Thanks!

  • Guest

    I had a brain aneurysm about 5 years ago that left the right side of my body
    completely paralyzed. I couldn’t even spell my full name.
    Work my you know what off and was back at work in 3 1/2 months. Granted I was a bull in a china shop but I was alive and working again.
    I worked so hard to live, to walk & use my right arm hand, to think, to be able to work & be successful and just enjoy life has now been taken away by people & the government.
    Everywhere I go it’s nothing but constant conflict and other people telling me “life isn’t fair.” What do they know about life being unfair? They don’t have a freaking clue as to what they are talking about and do nothing but cause conflict and make things much much worse.
    Everything is gone… Family, friends and I have completely lost my desire life.
    I find no happiness anywhere only conflict. Even when I try to avoid conflict people will not stop. I try asking them to stop and still they will not shut up. They insist I think & be like they are and will not let it go.
    The conflict has gotten so bad and the anger has reached a point that I honesty wish I had died 5 years ago.
    My brain was damaged and absolutely no one cared. No matter what I said people would not stop. It was like their words would go straight to the center of my brain and eroded my brain from the inside out.
    Told one “so called friend”
    I was suicidal and he told me “how does it feel bitch.” Fortunately for him we were talking on the phone. Otherwise I may have knocked his teeth down his throat.
    I tried reaching out to others but no one believed me and still most don’t. I have never been a lier and I’ve never been someone who cried wolf. Yet for some reason they still don’t believe me. Or deep down they just don’t care.
    The suicide rate for people with brain damage is double the national rate and triple for those of us who live alone. I now understand why that is.
    Before the brain aneurysm I was the person everyone came to when they had a problem or of they needed help. Not once in my life have I not reached out with open arms to help
    other people. Especially my family & friends. And they will attest to that statement.
    But during the weakest time of my life they threw me away like yesterday garbage and left me to die.
    Where were and they and why didnt they at least listen? I try to forgive them but they have screwed my brain up so bad I can’t forget, no matter what I do I can’t forgive and I do not trust anyone anymore. All they do is force their anger, hate & conflict on me. They will not stop.
    Most days I can’t even walk out my front door. I know so many people that I have to wait until it’s dark to go anywhere so I can hide in the shadows so I don’t see anyone.
    Never in a million years would I have done this to someone… No way!
    Sometimes I wish I had died 5 years ago. Sometime I wish life had a fast forward button. Sometimes I feel my life will end with me alone in a room with a shotgun.
    The ONLY thing that keeps me from putting a bullet through the back of my head is my faith in God and if I’m fortunate enough eternity in Heaven.
    All I ever asked was that someone would just listen. But no one does… Sucks…
    Does anyone that’s had a brain aneurysm have any advice?

  • Leona Ferrell

    I watched my Dad after brain surgery. He talked about wars he wasn’t in, yelled at friends on the phone he thought were bill collectors. For some reason, he “feared” the dinner roll that came on his plate every night. It was sad, and confusing and funny…all at the same time. He called me one day, from the hospital. I was at work. He wanted to know where he was….where his prison was….so he could escape and know which way to go after he got out! I had to call the hospital nurses
    station to make sure they kept him safe until I could get there.

  • Theresa Southern

    I just found out I have a benign brain tumor that will likely need to be removed with surgery. I was happy to find this post. Do you mind me asking where your tumor was located? Mine is in the right cerebello-pontine. I literally found out this morning. Sort of in shock but happy it isn’t cancer, right? But I am scared.

    • Felicia

      Pons, brain stem and cerebellar

  • Roger Darden

    I had one removed last year, 2 days before my birthday. It was a DNET, with a few OLIGODENDRO cells as well. I noticed that the 2 longest problems are short term memory and Wernicke’s Aphasia(but I made the Dean’s List at Shasta College!!! Last semester), and my primary doc has told me that it can be years, if ever, that we totally recover, and that has caused some slight depression. That seems strange…college Dean List, and back in classes 6 days after fall semester started. I did have to drop 2 classes but whatz expected, when the aphasia is so strong. I guess the problems that last are exactly what my Dr mentioned, but they ARE slowly passing. Sorry, just stating my feelings, and if anybody has seizures go to 5-6 a month, remember that I am doing amazing- and they removed 20% of the left Paratial Lobe; we can all do it. Just try not to stress, as that IS a major side effect, and unless ya have malignant cells and it’s grade 2 or less, you can do great. Communicate with your doc, and if you do not have a great one as I do, FIND ANOTHER. ONE WHO ACTUALLY CARES. That will be the main recovery is one who does more than a neuro that referred to in the first place!!!(after a neuro here in Redding Ca sent 14 requests to different hospitals, nothing in 3 months-mt primary sent out 8; 6 days later was contacted by Sutter regional in Sacramento, surgery 2 weeks later) Good luck!!!! Any thoughts, questions, let us know

  • Roger Darden

    P.S…another side effect can be seen in my last comment; it says “mt primary sent out”…booboo…was actually My Primary Physician…

  • Roger Darden

    And I also think that if I would have been told the Wernicke Aphasia is a major side effect I could have been more prepared-I wasn’t told that was a good chance of happening, or would have tried to have the surgery done at a different time, 6 days before returning to college classes had it’s own effects. We ALL need to be told EVERY chance of side effects, and what each and every one will be. I think the only issue with needing surgery so soon was because it grew form the size of a B.B. to size of a golf ball in 5 months, and rather than a biopsy to see exactly what cells it had, all 3 Dr’s said it might as well be removed…once again, frustration over the side effects seem to be th issue…but at least the seizures dropped from 5-6 a month to only 4 in the last 11 months, and if all of it was removed I wouldn’t have to take the Keppra, Lamictal AND Gabapentin for life- I miss driving!!!!!! Good luck and blessings to us all!!!!

  • Roger Darden

    And I feel blessed that I stumbled xcross this discussion site. We all share some “exclusive” issues, rare, and unique. We all share these things, and I will be checking in from time to time. Anybody new to these problems, ask me or anybody, because I am sure that those of us who have dealt with this for a long time(10 years) can help, etc. I sure know I studied hard on these issues-when told we have a brain tumor don’t we all?? Anybody ever have a question, ask, I might have some info, and if not, can give names of places to get answers.

  • TR Tyler

    In the ICU waiting area to see my partner of 27 years after brain surgery to remove a malignant tumor we did not even know existed until two days ago!
    Searching the internet for something the neurosurgeon told me and discovered this article. Amusing and helpful, I cannot wait to share it with Gail. The levity I needed pretty much when I needed it.
    Thank you for your insight.

  • Kim G

    My husband had surgery on June 15, 2015. His legs are killing him. He will walk, grab the table or whatever furniture is in front of him and talk to his pain. He says “come on” “let go”. Why is his legs hurting so badly? Did anyone experience this? He also says, “I thought I had brain surgery, not leg surgery!” This is his second surgery. The first one was in April and the doctor went through his nose. This time was craniotomy resection of tumor. A pituitary tumor.

  • Nia Cousland

    Thank you so much for this post. It’s been one week since surgery to remove a cavernous malformation along my brain stem. I wish I would have found this earlier, better late than never! You have no idea how much comfort this article gave me. Again thank you!

  • I actually read this article before I had my second operation to remove my brain tumor. I was looking for some sort of help as to what to expect from the situation, and this is one of the few sites I found that offered actual help. Thank you so much for helping me prepare. I made a video of what happened before and after the surgery, which might help others in my situation. This is not a spammy thing, I don’t want anyone to buy anything, I just think it might help people who are scared. And it is pretty damn scary to be told you have a tumor. You can see the video here https://www.youtube.com/watch?v=MRIEvnbNMkA

  • hairtiesandbows

    Thank you! My husband just had a 17 hours old factory neuroblastoma surgery and the doctors were brilliant. .. they removed the whole cancerous tumor! Now the road to recovery! THANK YOU YOUR FRIEND is lucky to have you! Your blog made me chuckle we have my sense of humor! Once again thank you!

  • pberb

    I’m with Zoe – I cannot thank you enough for this. My girlfriend is currently in this situation in Hospital IUC, and I found your post extremely valuable! Many, many thanks for this info!!

  • Raquel Falcon

    Everyone – I have started a blog about my experiences, which weren’t as serious as some, but still life changing. Here it is: https://ittakesatumor.wordpress.com

    I hope it helps someone out there as much as this site helped me.

  • Mandee

    FANTASTIC words of wisdom!!! Thank you so much for writing this; I am a month post-op from Chiari Malformation surgery and have felt lost regarding my post-surgery stuff. Every word of this hit home and the additional wit is very appreciated! Rock on, everybody!

    • disqus_gNqllXAg2L

      Love your article! I had a menigenoma removed from my lumbar (back) in 2012 and I was left with some weakness, 2 rods and 6 screws but I was glad to not be in a wheelchair. So I put my big girl pants on and went back to work asap. Then in Oct 2014 they found a right sided frontal lobe menigenoma tumor that was bigger than golf ball. What the crap, was my first thought followed by a pity party. So I had a craniotomy which they debunked it ( which means they could not get it because of location and the risk factor). The Dr also said I had 3 & 4th nerve palsy as well as V1 and V2 issue….So after 5 months I when for cyber knife radiation and now I am dealing with after effects of that as well. I feel 85 instead of 50…I have bad brain fog,short term memory issues,fatigue,loss of time, trouble sleeping at night,mood issues,right sided weakness,mouth issue from radiation…. ect. So has anyone else had the craniotomy/cyber knife combo and if so what were your results? Thanks in advance

  • Jeremy

    I’m 30 yeasts old and just had an abcess taken off my brain from a sinus infection. Surgery was Friday. Reading that article will be very help full for me. Thank you for sharing

  • maggie campbell

    Is it normal to have forgetfulness often even when my brain surgery was 2013 Every thing seems ok , But I do forget alot, I feel like I am always saying I don’t remember more now then in begining. Is this exspected. I had ct scan done awhile back due to hitting head but it was fine . iT IS scary why I am forgetting alot . Do you have answer please

  • Rachel Elder

    I have a huge dermal tumor on my cerebellum that has just recently started to cause problems. My neurosurgeon is debating on whether to remove it or not based on possible complications. Is it true that I may have to relearn how to walk, talk, eat, etc.? Will I be able to text my friends after my surgery? I’m super scared!

  • TN Fighter

    Love this post, and I hope you don’t mind if I link it to my next blog post (whenever I feel up to writing again). I’m 3 months post op for a non tumer related brain surgery (Motor Cortex Stimulator implanted to control intractable Trigeminal Neuralgia). I was NOT prepared for the intense recovery, as my amazing surgeon kept very positive and really downplayed the recovery. In my desperation to find out how to heal faster I stumbled upon your post. It really helped me to stop beating myself up for taking so long to heal. I’ve come back today to reread the list, to remove myself it is okay to still be struggling to do basic things. I get so frustrated by my limitations and often wonder what is wrong with me. Thankfully, rereading this candid post and the many comments, are a great reminder to take it slow and breath. Thank you!

  • Jerry Alan Carroll

    wrong kind of steroids…Anabolic steroids vs CorticoSteroids look it up

  • Shiela

    this is a very useful read.. my father is about to have a brain surgery, he’s 59 yrs. old, im still thinking if I would let him read this before his surgery.. anyhow, how about flying/riding an airplane? how soon can he travel long distance? We are thinking of sending him to the province to recuperate after his surgery, the travel is about 45 minutes, plus maybe 1hr land trip.. thanks for sharing your experience..

    • Tina.G

      Traveling is rough, just the 30 minute drive home was too much! Your eyes become really sensitive your brain is trying to process what it sees and the light gives you a headache from hell and your likely to vomit. I think it would be some time before you can fly due to cabin pressure on the brain. I’d talk to a doctor and advice the drive home to cover his eyes.

      • Shiela

        thanks for the info. will take your advice on covering his eyes on the drive home after his discharge in the hospital.

  • Rhona

    My 33 year old daughter had awake brain surgery a week ago and is recovering well but suffered with sickness for a couple of days so she had IV anti sickness and she was able to come home. We’ve had two good days at home but the sickness has returned. Any advice please??

  • Laura

    I am so thankful for this site! I have been looking for answers and getting nothing but “everyone is different” and “talk to your Dr.” answers. FRUSTRATED!!! I had a frontal mengianoma removed five weeks ago. The Dr. says everything went great, benign, got it all. I feel very blessed and am so thankful to God for answering prayer. I still am having side effects? and get anxious when I don’t know if this stuff is Normal. I have vertigo all the time, not dizziness, I have tried to drink more liquids but it doesn’t do anything. My ears ring and I feel like my scalp is stretched to the point where I have a tension headache. I can’t sleep without a pill, melatonin didn’t work. My neck hurts like I have whiplash, sore in the muscles and tender. Needless to say I feel depressed. how long will this last? Oh, one more thing on my laundry list…when will they wean you off the anti seizure medication? If you guys can do it I can too!

    • Raquel Falcon

      I had the same situation as you, Laura. I do have to get another MRI done in October I will share what I’ve been going through with you.

      • Laura

        Thanks Raquel! Have you heard of anyone having the pain in their neck?

        • Raquel Falcon

          i’ve actually had those lately but I think it’s mostly due to my job – though come to think of it I never had them before my surgery. Though it’s nothing like whiplash – have you tried putting a heating pad there?

        • Raquel Falcon

          Laura – just found a blog that answered your question. It’s because they put our heads at a harsh angle during surgery to get to where they need to operate.

          The blogger actually showed graphic pictures of a craniotomy which I was barely able to look at, but her neck was hurting too.

        • Robin Prososki

          I just had a meningioma removed from the c-2 on my brain stem, August 26, 2015. I have a terrible pain in my neck! They are working on it in PT by massage and I think it is helping finally. I feel like pinocchio, like it’s wooden. I have not started back to work yet, which is mostly sitting at a computer for 8 hours a day. I am very nervous about it!

          • Laura

            Robin, I had neck pain for 10 weeks after my surgery. Neither the surgeon nor the neurologist seemed concerned. I was told not to go to the chiropractor though. I just finished my 12 week follow up and I am not in pain but I still can’t turn my head past a certain point. I am going to the chiropractor asap. I had whiplash 30 years ago from a car accident and the chiropractor helped so much!! The massage helps the muscle but not the ” stiff and stuck” feeling lol. Hope you feel better soon. Thank God for this site because they don’t tell you ALOT about your recovery! Laura

          • Robin Prososki

            No kidding!!! Luckily my sister is married to a neurosurgeon! I get more from him than anyone! He said to take magnesium too. Are you getting therapy? I am still doing OT & PT and they are using the graston technique on my neck, if you can find someone who is certified in that I would suggest going there. Good luck to you! This has been the craziest thing ever!! I am glad to know there may be an end to the pain, it’s very frustrating! Robin

          • Felicia

            I have tinnitus in my left ear where tumor was cerebellar…hope it goes away soon

          • Robin Prososki

            I have tinnitus in my left ear also, I had it before surgery too. Mine might not have anything to do with my tumor. I am completely off pain meds, finally, they were making things worse.

  • Sally Mcintosh

    Wow I just had a brain tumour removed 10 days ago and the comments are so true, really made me laugh!

  • louise bonach

    My husband had his tumor removed 8 days ago and seems to be regressing instead of getting better. He is an avid card player and crossword enthusiast. Any attempts to do either of these activities are impossible. He ends up just filling the boxes with any letters and doesn’t seem to realize that anything is wrong. His jigsaw puzzle efforts just produce a long line of any arbitrary piece connected to the next piece. He is very tired but gets up several times a night to go to the bathroom. He spends a lot of time just gazing out instead of engaging. His 10 day check up is on Monday but thus far the tumor team hasn’t really given me anything concrete to expect. Any one have similar experiences that can give us an idea of what to expect?

    • cathrynp

      I had a colloid cyst removed from the middle of my brain about four months ago. I”m a big crossword puzzle person. I did them right after my first surgery, and was fine. Then I had complications and had about 4 or 5 more surgeries – I don’t remember any of that and was totally out of it when I finally came to. I didn’t do a crossword puzzle for about three months. I didn’t even want to look at them. My brother brought me a crossword puzzle book and I never opened it. But last weekend I suddenly wanted to do the crossword in the paper and sat for an hour or two and did it. Wasn’t perfect, but I was back to my old self of enjoying doing it. My surgeon said it takes a year to recover from brain surgery, which I didn’t believe at first, but I guess it really does just take time. There are pieces of things our minds used to do that just don’t work, and then it falls into place at some point. It’s weird. That’s all I can figure out so far. I think your husband may get better and better with time. I was a mess at 10 days out!

      • louise bonach

        Thanks so much for replying. He’s made so much progress these last few weeks. Today he even walked 8,000 steps without any assistance. Physically he’s recovered about 90%. Mentally he’s come a long way, too. He’s back to doing his crosswords and playing cards with quite a bit of finesse. I finally feel comfortable leaving him alone. He’s really tired most of the time but I see a little progress everyday. I so appreciate you responding. Thanks.

        • cathrynp

          Sounds like he’s doing great! I forgot to add that i was really, profoundly tired for months after surgery, and now, around four months out, I still get tired much more than before, and I sleep a lot more than before. I think that’s part of the recovery. Sounds like he’s moving right along — this recovery just takes longer than any of us think it would! Hang in there and best thoughts to your husband.

  • Maureen Cavicchi

    My son just had surgery for an enlarging arachnoid cyst in the posterior fossa. I am reading this while waiting to hear. God bless you for this post.

  • Jon

    how long does point 10 last? how long until your hair etc is back to normal?

  • Sharifa

    Wow i never thought i would find this ‘brain tumor community’ as i was searching for all the consequences after the surgery and lastly i found THIS! After a year i noticed still hard to recall my memories. A few stuff i remember,and few stuff i forgot. And whenever my family member say “what you dont remember this..? You dont remember that..? It breaks my heart 🙁 does anybody experience this??

    • Felicia

      Yes 7 months post op…..

  • Melissa McFarlane

    I had a frontal benign meningioma removed 3 weeks ago…and had some side effects like tingling in feet and trembling hands.. they have me on Keppra for anti-epilepsy and said to watch for twitches which may be small seizures… have you ever had seizures at all?

  • Nancy Atkinson

    Two brain surgeries and one gamma knife later I still have mushrooms in my head. We are watching them. Last MRI they hadn’t grown.. Yeah!! One thing about steroids.. I was on deximethisone after my last craniotomy and it kicked my butt.. I almost lost all my muscle strength, had to use a cane to walk.. My doctor was gone for Christmas holiday… So I started weaning myself…never ever stop your steroids cold.. The steroids were the worst part of my second craniotomy. First go around they hardly affected me except insomnia. However the first time the doctor had me weaning off of them after about a week. (Had two different surgeons). This list is great.. Wish my family had read this.. While on deximethisone I was also really agitated, and could not get enough to eat,. Blew up like a balloon.. The things on this list seem pretty consistent with my experiences.. Yes.. Doctors, hospitals should have a list like this to give patients and their families going in for brain surgery. My family just thought I was being unreasonable.. Which I was, but I couldn’t help it!! Thanks for posting it..

  • cathrynp

    I wish I had seen this post four months ago when I had surgeries (many) to remove a colloid cyst form the middle of my brain – and then to deal with complications that arose.

    Everything you write happened, and to some people who commented, yes, I also hallucinated. I had just a crazy long time of hallucinations while I was in the hospital, and even some after. At times I wondered what dimension or planet I was really living on, or if I’d lost part of my mind during the surgeries and would never be the same calm, rational person again.

    My neurosurgeon kept telling me “it’s early days, it takes a year or more to recover” – and though at first that seemed crazily impossible, I now believe him and see it. I started to take things very slowly during recovery, slept as much as I needed (which has been A LOT), and I try not to be anxious about recovery. I also try to ignore people who seem to treat any memory lapse as something serious – I didn’t remember everything before the surgeries anyway. It’s working – things do come back and straight thinking comes back, it just takes time.

    My first brain surgery was emergency, so I didn’t have time to prepare or look for blogs like this.The medical staff, much as I’m grateful they kept me alive, was not helpful with recovery info. Wish I’d seen this post then, but glad to see it now – thank you!

    And for those heading toward surgery, I ended up having more than 5 or 6 surgeries after my craniotomy because there were some serious complications that I still am not fully clear about (I don’t want to know – I’m alive and for now that’s all I care about). I ended up with a permanent shunt in my head, but I’m alive, and am doing, i think, just about as well as before this all started. They even discharged me from physical therapy after the first appointment, as they said my functions were all fine and I didn’t need it. I luckily haven’t had speech or walking or other motor function issues. Just memory and weird disorientation at times. Time and patience — and a good support crew around you — really do seem to be the magic ingredients.

  • Ling Ling O

    I just done my radiotherapy surgery and experience almost similar situation that you went through. I’m glad that my experiences it’s just as almost identical what you had gone through. We will brace through this storm together!

    Btw your blog is a comfort to many. And you made me laugh out loud. Thanks for sharing! God bless you!

    Keny Lingo, 32, Singapore.

  • Raquel Salaysay

    Has anyone had any post-craniotomy neck stiffness at the top of the neck?

    • Felicia


      • Raquel Salaysay

        Mine finally went away but only after I started Transcendental Meditation – it magically disappeared after my first session!

        I recommend meditation in any form for further recovery.

  • LaDawn

    Thank you so much for the pointers. I had my surgeries 6 year’s ago. They found 2 aneurysms in my head. I was actually having pressure on my orbital floor (eye socket) so they did a cat scan, well you know somethings up when your phone is ringing like crazy at 6am the following morning. I didn’t understand at first, I was like what’s this got to do with my eye. Strange thing same day cat scan done no more orbit pain.. I like to think it was g-d’s way of knocking me upside the head.
    They did 2 surgeries 2 days apart, one to coil one of them the other to get clipped.
    I was in Neuro Intensive Care for about a week or so, don’t remember much as I was stoned out of my head.. One thing I do remember is I was standing in the middle of my hospital room and the It’s were out heart monitor off and I was in my own pajamas! Bells and whistles were going crazy I think half the medical staff came running in my room, pulling a big crash cart. Doctors were coming from everywhere it seemed. They asked me what I was doing and why, I had no answer well except for one as they were changing me back into the lovely, flattering hospital gown I guess I was asked who the president was my reply “I’m not into politics” lmao Omg then it happened my legs went out just all weak and wobbly.
    This is all recanted to get to this point it’s almost exactly 6yrs since that week and my legs are still rubbery. If I’m squatting down getting back up can be scary. I still have to have angiograms and MRA’s. They tell me in time my leg strength will come back (after 6 years, yeah sure).
    But I am surviving, I work what I call my Frankenbolt into my makeup routine. I still forget things unless you prompt me, then a memory will take over. The big thing here everyone needs to know is I’m alive and took me a bit but I stopped forcing myself to get better.
    Remember you had brain surgery, not many people get to say that and be able to walk around sharing your story. So please read the steps that were broken down for you and read my post and know nothing is normal about a crainiotomy. Ahh, lol, I jus had to read back to remember what I was trying to say.. See it happens you laugh and just move on. Whatever you do after the surgery take the pain meds, stay in front of the pain. If you don’t you’ll spend a whole day trying to play catch up. And if nausea sets in from the pain you might be freaking like I did, terrified to throw up for fear of your brains falling out! Please email me anytime if you have any questions or just need a listing ear.. I’m right here for you!

  • Anthony

    2 questions I was wondering if anyone could help with.

    1-Is there any way you can better explain what “not feeling like yourself” feels like after having the surgery.

    2- I was also wondering if you could elaborate on how the experience was surreal for you.

    • Felicia

      I had nightmares, hallucinations, conspiracy theoriies, paranoia

  • Jessalynn Grant

    Thank you for posting this. I am at two weeks out from a Meningioma removal and I swore I was feeling better but now I’m not so sure. My stomach hates me and I’m (tmi) pooping all the things and back to being super dizzy 🙁 I just want to feel better.

    • Felicia

      I’m dizzy too 7 months post op but back to driving….yippee, no mall though, be patient

  • Chrys Ruiz

    I cannot thank you enough for this wonderful piece. Let me begin by saying this is the most helpful and endearing message I have read in my lifetime.

    My father is a 57 year young gentleman. He also just happens to be a hero to so many. (It extends past family and friends.) He would/has put a strangers life before his and I cannot stress enough how true this is.

    It all happened so fast… He had an issue with his lungs and wasn’t quite the same. I guess standing naked at 5am staring at the wall isn’t normal. But my dad is a pensive guy, so I didn’t want to believe it anything was wrong until that left my mother no choice to take him to the emergency room. Previous doctors told him the coughing was a side-effect from taking some type of high blood pressure medicine for so many years.
    Once they found “shadows” in his scan, they decided to search a few other things.
    Long story short- tumors galore. Major issues: One in the brain and one resting on the spine. They’re still running tests on the rest of his body.
    I never thought my father would ever be sick (at least not like this.)
    My brother, sisters and I are having a hard time channeling our anger.

    So I haven’t slept with this discomfort. I’m constantly thinking about what my father must be going through and selfishly I have acknowledged how hard I am taking all of this. I was reading so many articles, blogs and watching so many videos about what to expect and came across this.

    This piece has been a small breath of fresh air.
    He is currently in surgery, and I feel ready. I’m on my way back to the hospital and I will patiently wait for him to open his eyes.
    From the deepest part of my heart… Thank you.

  • Jacqueline Brower

    Four years ago I had my first brain surgery and five months ago I had my second. I thought I knew everything there was to get through but this surgery by far has been the hardest. This article was such a reminder that my body is still healing and I need to be patient. Thank God for the good days but the days filled with migraines, dizziness, foggy head, memory loss, incision pain, speech trouble, etcetera I just need to realize healing takes time!!

  • andrea mendez

    Thank you for this !

    My boyfriend just had surgery on his head because there was blood in his brain (that happened after a fall).

    Everything you explained is right on cue!
    Thankkk you

  • 3kimberlydawn3

    I love #20! My mother was just operated on for a brain tumor yesterday, which is why I read this. Glad I did!

  • Felicia

    It’s normal…..be patient

  • Felicia

    Your right, 7 months post op. …..

  • Yes, it is indeed normal. Repeat the stories back to him after he gets better, he will not remember most of it. That happened to my guy months back right after his brain surgery in Aug 2015.

  • Mido Sake

    Thank you for taking the time to pin point all these changes that occur during and after brain surgery because amongst many other things they are spot on.
    Experiencing the effects of a slow growing Pineal Gland mass myself almost 2 years ago now I often wondered how there are so many things that Dr’s just don’t think to give you a heads up on. Realizing how important of an event it is/was/will be in your life as you thrive after it never ends. Those who have gone through it with their family members and friends, coworkers are the ones on the inside with the powerful ferocity of insight into your own body and mind. Once example I would have never imagined and no one knew to tell me about was when I had an Extra Ventricular Drain placed into my brain like a red rubber catheter straw simple poked on through a hole drilled into my skull was that I would see electric blue flashes sometimes when I moved my head, especially after they removed it and I was discharged from the Neuro ICU at UCSF. Or that when your head is covered in lidocaine to remove such a drain that your vision can blur and that as it runs down your head you can feel it from the outside into your throat and completely freak you out like you’re being sucked into a black hole.
    Right before my second surgery and the most major scariest one anyone could really ever have other then open heart surgery a med student was explaining to me how they will drill a hockey puck hole in the back of my skull for the craniotomy and let my brain slump down away from my medulla to get into the center where my Pineal Gland is/was. That is the last thing I want to hear before I get knocked out not thinking about my new future bizarre haircut only to think about that hockey puck sized hole in my skull healing for the next 6 months like the top of a jackolantern held into place by permenant tiny pins. Those are our experiences though, REAL, and FOREVER, and part of us and our life experiences. We are stronger people then everyone else for it.

  • Joanna Grimes

    My mother just had a meningioma removed 2 days ago. The drs were thrilled with how it went but since then shes not as alert as they expected her to be. They say she follows commands but wont fully wake up wont open her eyes. Im scared they put a drain tube and got more fluid off her brain but shes just not doing well. Anyone else experience this?

  • Laura Gregory

    I am also experiencing all these and then some. I am having shortness of breath heart racing then heart rate slows way down, blood pressure is all over the place. Which is causing me more test to make all is ok. Which all test so far are negative, sweating is crazy i thought going through the change was bad nope not even close. I also ended up with whats called left low vision.

    • Yolanda Hatcher

      Read about -smpathetic storms- following surgery. That should help with treating ur situation

  • Catherine Felix

    Thank you for sharing this advice. I recently had the misfortune of having to under a pretty intense surgical procedure. I had to undergo some reconstructive surgery in order to correct a severe trauma. The whole process leading up to the surgery was traumatic for obvious reasons. I don’t want to go into too much detail but during my surgery, my team used a FAW blanket and it helped so much with my post surgical recovery. Here are some facts about the system http://www.fawfacts.com

  • pineapple

    This article just made me (and my wife) smile and laugh so much – thank you for this. I had brain surgery four weeks ago and wish I had read this sooner. I haven’t had any complications (so far), but it IS taking a LONG time for me to recover and I am so damn tired ALL the time. Peace to all.

  • Mama j

    My husband had a temporal lobe tumor removed two weeks ago. As a caregiver it is so good to read this. They definitely didn’t prepare us foe how difficult the recovery is.

    My husband is experiencing vision weakness in his eyes. Each day seems to get a little worse. Has anyone had this post op and had it return to near pre-surgical normal? I’m concerned he will lose his eye site.

  • Verka Martin

    I have not had the surgery yet and needed to know all this. Thank you. It helps with my expectations and to be prepared.

  • diane

    I had emergency avm surgery sept 2014 and i have the absolute worst head pain i could ever describe on a regular basis. I had a bad reaction to the metal plates so they were removed leaving me with 2 holes ugh right lol. I am on gabapentin for the nerve pain in my head and foot which i have no feeling in anymore because of the surgery. The doctors have told me only other treatment for the head pain is freaking botox injections in the head to kill off the damaged nerves..um no thank you i don’t do poisons but that is my only option left. My short term memory is shot to hell with a grenade launcher i swear. My doctors have diagnosed me with adult onset ADD but i think it all goes back to the surgery because they had to remove a lot of brain tissue around thr the avm because the leaking blood damaged it. The pain we live with is unreal!

  • robert blackstock

    im 43 now and still have some minor problems from a non cancerous tumor removed from the inside of the spinal cord in my cervical area to the brain stem.i was temporarly paralyzed from the neck down due to the brain stem swelling i pretty much was awake for 11 days with small amounts of sleep when i would just pass out from exaustion.Over the years i managed to run just about my whole family crazy with the effects of surgery and drugs i took.I found that methamphetamine helped to the point i was driving and working but in time i just made me mentally intolerable i thought everyone was out get me and that the goverment had been doing experiments on me .Now im able to be on small amounts of meds and identify with the side affects .i walk funny and my hands are disfigured but im so thankful to live alone and take care of myself .I have alot of issues with meeting people now and still feel paranoid when people stare at me for how my arms work and the way i walk but Goid is real and so good and i wouldnt change a thing one good thing is i read alot now and can retain morte than the average person i studied alot about brain stem scarring and got scared at first but now im cool lol just take one day at a time now i help people going through the same thing and it makes me feel so good that God has gave me this gift 🙂

  • Dean

    A very refreshing and honest view of what to expect.
    I am 6 months post surgery for AN and still terrifies me when I feel a sneeze coming !!!
    The Tinnitus is deafening and added to balance issues I guess we expect to much from our recovery sometimes.
    My surgery was approx 10 hours so the sore throat issue you mention is to be expected.
    My wound site is still very sore and I have pain in 3/4 places on my head where the frame was attached during surgery.
    Good luck to everyone who is preparing for brain surgery of any type.
    You will be in good hands I’m sure so don’t worry (I know it’s normal) but before you know it, you will be home and on the road to recovery.

  • Cynthia Calderon

    I love this article. I had brain surgery 3 weeks ago and have experienced all listed. The emotional roller coaster not knowing how to express how I feel to family and then seeing this article was reassuring I’m not crazy lol. Thankfully I’m healing fast, still dizzy and difficult focusing too long. I have faith. Great article!

  • Michelle Lanham Lyons

    Hello, I’ve not had the brain issues myself….but my husband had an aneurysm one year ago. Frontal lobe area, April 18th to be exact, he was back on the job June 1st with some side effects…….problem is now he is changing into someone I don’t know. He’s angry, aggressive, agitated about everything. Very unhappy, if someone tells him about health issues they have he has them by the next day. He can’t handle loud noises, being around a lot of people. All of this is the opposite of what he used to be like. He really hates people, before he loved meeting new friends, an he worries all the time, he only seems to see the bad in any situation. Up until now there were not many things different, but I’d say in the past six month’s he’s went down hill fast. I truly don’t know what to do. I no he needs me now more than ever….but I’m at a loss as what to do to help him….or is this even normal…I’ve read a lot of info on TBI an that isn’t helping at all. Thanks, feeling lost

  • Debby Setor

    This is so helpful, Thank you. My sister goes into surgery in a few days. We are all nervous, herself super nervous. We have prayed and received prophesies, Some prophets are saying she should not do the surgery, that the tumor would vanish. We are a very Spiritual & Religious family. Can you kindly bring science to meet religion and advise which is the wisest advise to take? Go for the surgery or wait in faith, that the tumor would vanish?

  • Joy Urdanilla

    l had a head surgery 7 mos, ago, l still have tolerable headaches but it’s same side of my head like before the tumor was removed. Weird….

  • Deb Lawson

    I have had 4 benign tumor surgeries 4 years in a row. Wish I had read this before they operated. I really think I am suffering from PTSD. can’t get back to being me, if that makes sense.

    • deebronx

      Perfect sense!!!!!! It took me a year to realize it!!!!

    • Tina Northwest

      I can relate to the PTSD as a mother of a son who had the surgery and I do believe he also is experiencing the same thing. I just say son make sure your thoughts are not lying to you and we discuss here and their how he is feeling. I would like for him to see a trained and I mean specialized therapist who deals with trauma.

  • HweeMin Liew

    Great piece!! Love your humor in a not so funny situation. I had spinal surgery to remove a tumour 3 years ago and I had the lack of concentration too… Not sure if it was the GA or the anxiety that caused it. And the constipation, OMG… I ate 8 prunes every night for a year before my rectum decided to wake up from surgery. LOL! And your observation about visitors, how you won’t be able to predict who’ll visit well and who won’t; well I griped about that for weeks. Sometimes I still get upset about how people said the totally wrong things back then. Ok ok, I know, I’ll let it go.

    Like you I’ve always thought I have a novel in me but unlike you the scary episode didn’t spur me to write it… Hope I’ll get there someday.

  • PB

    Within two months, my father had three burr hole surgeries due to a subdural hematoma. He was hospitalized approximately five and a half weeks and treated at three hospitals. You have provided more need-to-know information than I received from the multitude of health care professionals I encountered combined. As others have said, your points should be attached (in bold print) to discharge instructions. Thank you!

  • MLB

    A family friend is having brain surgery in early June. My husband and I think the world of her and want to help prepare any way possible — what are those “must have” things in those weeks after your surgery? What helps pass the time in between resting? I love the idea of fresh new jammies and pillow cases — how great!! What else? If reading / tv is hard on the brain, what is easy on the brain? Any other ideas on how we can help make her recovery more comfortable? Thank you all – and god bless each of you and your survival stories as patients, spouses and loved ones!

    • deebronx

      A sound machine was very relaxing for me

  • Chini2

    Hi I just came across this blog I just had a tumor surgery about 8 months ago im 35 yrs old iwas doing fine after surgery but lately I’ve been feeling sick again throwing up alot having alot of pain in my head at times my head feels so sensitive the doctors think it could be the screws and the plate but I will soon find out I have an appointment next week,,,what I wanna know from people that has had this surgery done is it me or the surgery but I don’t feel the same since surgery I feel like my life has changed, alot of things don’t feel normal like before surgery ,sometimes my speech gets bad I’m scared cause I’m having major headaches I always feel sick feels like I don’t have a life I’ve been constantly in bed when I have pain in my head the pain is so horrible I throw up everything I eat ,can someone tell me that had this surgery how’s life been or what has changed for them

    • lori myotte

      Hi there… I can’t tell you enough how I can relate to your story, I’m just about 9 months out from a SDH.. (Bleeding on my brain) burr hole surgery, and it’s been a real honest to God nightmare. I have constant clicking on my scalp, and have such HORRIFIC pain in the 2 burr holes.. I’ve certainly tried to gain a sense of humor from all of this, but at times I feel like, I’m “literally” losing my mind… No pun..

  • Charlene Gray

    Hi – are you better now ? B

  • Nicholas Baravik

    I found this page 2 days before my surgery and am posting 2 days after my operation. I have a tumor in my left frontal lobe that affected my motor control in my right arm and face as well as the part of my brain that controls my ability to speak. I had an awake craniotomy so that my neurosurgeon could talk to me throughout and make sure he didn’t ruin my ability to speak. There was a point during the operation when my speech became slurred and wasn’t coming back. I was in tears believing he had gone too far and that I had lost my ability to talk. After a night in the ICU my speech came back. Over the past two days I have improved by the hour. I’m still stumbling over my words a little bit and my dexterity in my right hand is still coming back. Typing this post I have to take it slowly and watch my right thumb while typing on my phone. It’s difficult, but I will continue to practice. Plus the cocktail of medication I’ve been taking isn’t helping my coordination. My surgeon was able to remove 10% of the mass without harming me and I’m thankful for that. It will still be another week or so until I know the nature of my tumor, but I’m staying positive and concentrating on doing everything I can to improve my situation. Overall, I am very satisfied with how everything has gone. The nurses, technicians, and surgeons have all been very competent and kind to me. It’s helped my outlook and mood immensely. I’m scheduled to be discharged tomorrow after spending May 29th – June 13th in the hospital, from diagnosis to treatment. My symptoms began at that beginning of May and I only had 4 seizures before having an MRI and discovering the mass. I am extremely fortune to have found and treated my tumor so quickly. I’m looking forward to making a full recovery and getting started on my refreshed view on life. I was kinda of in a rut in my life when this happened and it’s been a blessing in disguise honestly. I now have a renewed motivation and appreciation for my life, it’s a surreal and fulfilling feeling that I hope never leaves. I’m going to ride that wave for now and benefit from it as much as possible. Life is an amazing gift and it took a brain tumor to make me realize it. Good luck to all of you on your journey to recovery, I know all of you have it in you. I didn’t know how brave I was until I had to be either. Sending love and support to all of you.

    -Nick B.

  • trixiesirish

    So, I’m not officially crazy. While I’m grateful it’s not cancer (a rare of the rare tumors, but all gone), this experience has been devastating and one of the most upsetting and confusing of my life. The aftermath was not explained as well as it should have been. The emotional aspect has been mind-blowing and I was not prepared. It’s like I’m flying around in a hurricane and can’t grab onto anything. My caregiver is overwhelmed. My personality changes are unbelievable. Physical, cognitive, and mental fragility (surgery was 3 weeks ago). This is the best article about post-surgery I’ve read. Thank you, thank you, thank you.

  • deebronx

    I had mine a little over a year ago and have had a plate also. Lately I have a very sensitive spot on the incision line and tightness on top of my head where the plate is. Have you been taking any meds? It is scary!

    • Chini2

      They recommended me to go see pain management but I don’t want to stuck on some pills for the rest of my life

  • Michelle Pineda

    The headaches, it will be 9 months since I had my skull put back, Brain surgery the surgery that keeps on giving.

  • Michelle Pineda

    My Sugery was emergency on 8/29/15, I had an aneurysm burst. I had a stroke, woke up somehow knowing I had brain surgery. a peice of skull was removed to allow for swelling. I am a registered nurse, I was taught the brain does not feel what a joke.

  • Aimee Normand-Buchberger

    I had a pituitary tumors removed less than a week ago. They went through the nose to remove it, less invasive and shorter recovery time. Most of your blog also pertains to my type of surgery. Let me add that coughing fits are bad, they make your head feel like its going to explode. The attention span is right, trying to focus on a single conversation is really hard. Always follow doctors instructions, they know what’s best for your situation. I didn’t believe them when they said 2 days after my surgery I could go home and would heal better at home. Don’t strain yourself eyes, it will give you a headache that’s not worth it.

  • Hector Silva

    I had brain surgery on February of this year and i came in thinking that it would be the same and came out of surgery a different person. A stronger person no doubt,so to anyone who has suffered and or still suffering just know that we know how it feels too and i know its hard and there’s gunna be tears along the way just know that if your reading this its that your blessed and your not alone…and to the person that wrote this, thank you this was by far the toughest thing to get back up from but you leant me a hand and gave me the strength to get back up… Thank you brother.

    • Anthony

      I’m going to be going for surgery soon…can you tell me what to expect after surgery…I know every case is different but I want to hear it from as many people as I can so I can prepare for it…thanks for sharing your story

    • Zindagy Zinda Raho

      I had my brain tumor removal surgery April 2016 and I am still trying to recover. I have many panic attacks and two seizures since the surgery. My ears became really sensitive that I can’t handle even small sounds. I want to talk to people who have also been through this. Right now I don’t know anyone and I could use the support. Please email me at pak_bibi_lucky@yahoo.com.
      Thank you,my cell num 4434843391

      • CpSmith

        Hi – you might want to check on Facebook – there’s a closed Facebook group for colloid cyst ‘survivors’ (a non-cancerous brain tumor that is deep in the brain). There’s another one for hydrocephalus/shunts. Those have a lot of people in them and a lot of discussions. There are probably more closed Facebook groups for related thing – for cancer tumors, other brain surgeries, etc.

  • Kathy Kozlowski Libby

    Thank you i really enjoyed this article
    I just had a stage 3 Anaplastic Oligodendrglioma brain tumor removed from my frontal lobe so far my recovery has been great. We will see how my next stage of treatments go with radiation and chemotherapy

  • ScottH

    This is so spot on! I was hospitalized three times in as many months beginning in December 2015 after a fall due to new blood pressure medication reaction. There was a small bleed on my brain that “appeared” to have stopped. I was released and over the next month my health disintegrated so gradually I just compensated. My sight & depth perception were way off. My legs we so heavy I could barely walk. After nearly falling again, I went back to the ER and after another brain scan the bleed had increased in size X 7. Had immediate burr hole surgery and spent a couple of days in ICU and was sent home. Had to take anti-seizure medication and no driving. Returned to Neurosurgeon 1 month later and was still bleeding! Surgery again, full craniotomy this go round. Returned to work 1 month later (hotel manager).While I looked OK but for the expensive haircut, internally was another issue altogether. Everyday was/is different. Those windows of feeling great were/are such a relief but few & far between. Wish I saw these 20 points months ago. They are helpful now & for that I am grateful.

  • Justin Rodwen Hill

    This information will help those inflicted/afflicted with epilepsy, my son is permanently cured. Check out this blog to learn more the herbal product, http://curetoepilepsy.blogspot.com/

  • Michele Corum

    Wonderful to read your article it is true especially for me I’m in the first weeks after surgery. Anyone who has this surgery needs to read your article Amen. Thank you so much.

  • Joe

    I’m so glad I found this article. It helps explain a lot of things. My total was 5 surgeries to correct my ruptured aneurysm. I was pretty much used to pain, but my God! After surgery I
    came to with body spasms every day. It was like someone was ripping out
    my spine and the only things still attached was at the base of my spine
    and the base of my skull! I pretty much begged for my traction for the compression’s in my neck. The surgeon promised me it wasn’t that. Okay, he was right. Seems it had
    been leaking for years according to my neurosurgeon. Explains those
    extreme migraines I started having. He said I was really lucky, and my blood loves to
    clot. The reason I am still alive, and for a couple of more procedures
    to dissolve some blood clots in my brain. Oh well, still here! They
    didn’t really explain anything before surgery because it was emergency
    brain surgery, and they didn’t think I was going to make it. I’m always
    disappointing someone I guess. It’s okay. I think everyone’s happy with
    this disappointment. It is a constant battle to be the best you can be “AGAIN”! Just keep trying. I have a few problems. Memories, skills, strength or weakness, and assorted other things. None of which are worse than the alternative. Pushing up Daisies!

  • Laura Kay

    It’s been 11 months since my surgery, and I can still relate to so many things on this list!
    I honestly believe that this list should be handed out to patients before their surgery, because it’s so very insightful (and truthful!)
    As an 18 year old girl, it’s been a very confusing and emotional time for me, and I feel this list would genuinely ease people significantly! Great job!

  • Megan Alder

    Thank you for sharing this. My mom is having her brain tumor (non cancerous) removed on Nov 21st and I am now better prepared for how I can help her recover. Thanks so much!!

  • Simon Heath-Sargent

    I’ve just read the above and for the first time in months feel someone actually understands what i’m going through. The points you make read as if i’ve written this piece myself!!! Particularly the emotional side of things which im finding hard to deal with. Wife even wondered if they treated me to a course of estrogen!! I had a cyst removed back in July and now have a nice six inch scar on the rear of my skull as a reminder, unfortunately whilst in hospital i also developed chemical meningitis which prolonged my stay.The headaches are fewer and less painful now then ever before but having returned to work on a part time basis i’m just left wondering where to turn to now. We’ve booked a family holiday for easter next year which is something to look forward to but i must admit you are left with the sensation of what is this all about.

    • Stephanie Hawley

      The estrogen comment made me laugh. I was an UN-emotional person prior to surgery. In the months after, I would cry if my blanket wasn’t covering me up just right! Lol
      Glad you are doing better.

  • I know this is years latter, but I will likely need surgery either soon or in the not to distant future to remove a thankfully benign tumor. I am scared as hell, but this has at least helped me a bit to know it will be weird and hard, but not impossible.

    Thank you

    • Steven Beshears

      Don’t be scared brother.. I had a tennis ball sized benign tumor removed from my left frontal lobe about a year and a half ago, and I can vouch for the 20 things..I was cut from ear to ear, had 40 staples, and stitches.. Pretty much count on these 20 things happening and ALOT of healing time.. At least a few months before you feel semi normal.. Just remember to keep everything clean. I learned the hard way from my pillowcase, it can get infected, and your face will swell. Shit, like 2 months after my right arm couldnt even pick up a peice of paper off a table.. But that only lasted two days. I also found sleeping in a recliner for the first couple months helps alot.. The head elevation.. Also, keeps you from rolling around on your incisionwound.. Good luck brother.. Stay strong.. The will to live is 75% of surviving the surgery.. (Thats what I tell myself anyway.) I feel for you, I didn’t even know I had a tumor until I had my first seizure ever, then was told I had two weeks to live after an MRI.. I couldn’t imagine knowing months before.. Stay positive.. You WILL SURVIVE, and be better for it.. Be brave my friend, and good luck.

      • I have been doing better after talking with my wife (RN) and doing more research. My appointment with the neurosurgeon is 2 weeks away so i’m starting to get antsy to get the next step over with. I do find myself getting super emotional over things that normally i would not and i don’t know if its because i have a new perspective or the tumor is pressing on something. I have found out it is on the right side of my brain and roughly in the location that controls language, dialog and emotions. It is just a very wild concept that i have a (much smaller than your’s HOLLY CRAP!!!) tiny hitch hiker in my head. BTW i have named him tinny tim.

        and speaking of seizures that’s how they found out i had had a stroke 8 years ago is when my neuro pathways started to rebuild and my brain “rebooted” i started having seizures, and ticks and for a period of time lost the ability to speak and lost my memory from that summer, fun times.

    • Danielle

      Just remember thank of happy thoughts before they put u under I did not thank happy I was mad and I woke up flipping off my hole family..

      Also remember God is with u.

      • well the meds will help with that, but thank you for the advice. I feel better now after long talks with my wife (a nurse). I have my appointment with the Neurosurgeon feb 6th so i’m a bit anxious now just waiting for the appointment.

  • David Ocampo

    Amazing post buddy! I had surgery a week ago and i didn’t knew what to expect, i was freaking out because i couldn’t walk this morning i said to my self it has been a week i should be running but thanks to you i just realized i have a looong way to go but at least i know now that im going to be ok thank you you are awesome!

    • lin o

      It definitely takes time David. My husband had surgery back in November and just returned to work a day ago. He rested a lot and it seemed that made him heal so he was able to get up more in the following weeks. Every week will be more improvement from the last.

  • Stephanie Hawley

    First off, your article is right on point. I can’t tell you how much it helped me realize that I was NOT completely nuts! I came across it a few weeks after a benign brain tumor removal of my own. A golf ball size sucker, right there in my left lateral ventricle. I vaguely remember anything between May 20th and the beginning of July. Luckily, or perhaps embarrassingly, I took many selfies while I was hooked up to monitors and drains and posted them all over social media. I never wanted to hide anything that was going on and would rather share with everyone. I tried my best to find humor in every aspect of my journey and I think I did a pretty good job of it. If there is one thing I could tell anyone who is having the strange symptoms and their doctors just aren’t listening…. DO NOT let up on them. My doc basically told me I was crazy for over a year and I finally told her I wanted the damn CT scan. And, she called me after the results to personally apologize for not catching it sooner. So now, after 7 months, I’m feeling pretty good. My peripheral vision in my right eye gets a little foggy sometimes, especially when it’s really bright outside. I STILL get headaches, especially after drinking a sip of an alcoholic beverage. They aren’t too bad, compared to the debilitation they caused me before surgery. I also came to the painful realization, that most of the friends you had before, are going to disappear. So, I guess they aren’t really friends then. I’m not sure if they just figured I was gonna die or what, but I definitely realized I don’t need those people in my life. I am 31, and married with 3 kids. Them, along with my mom, got me through this. If anyone needs to talk, I’ll gladly answer if I can. Good luck to whomever is reading this.

    • Anthony

      Thank you for your story…can you explain what I’m going to expect after surgery….

      • Stephanie Hawley

        Hi Anthony. I would say that immediately after surgery, you are going to be so doped up, that nothing is going to feel real or make sense. There will be some type of drain into your incision so that the “juices” can drain after surgery. It is a pretty uncomfortable thing when they go to take it out, but it only lasts for a few seconds. I went home after a brief 3 day stay in the hospital, which I thought was insane.
        I threw up the entire 30 mile trip home, so bring a sick bag.
        Upon going home, some things happened that I was not prepared for.
        Every time I sneezed or coughed, I would hold my head because it felt like it was going to explode.
        The floorplan of my house that I have lived in for 8 years seemed completely foreign. I kept walking in the wrong direction to try and get to my bathroom. I tried to take a shower with my clothes on. Luckily I had my husband here to help me, but it was like getting undressed in front of someone for the first time. It’s not that he seemed like a complete stranger, but it felt weird undressing with someone else in the room.
        I tried to do the dishes but it was as if I was moving in slow motion and couldn’t exactly coordinate correctly to get it done. I had to mentally tell myself to pick up a dish, wash it off, put it in the dishwasher. Every movement was strategically coordinated.
        I slept……ALOT. I was on pain meds, antibiotics, acid reflux OTC pills, and anti-seizure meds just for good measure. I don’t remember much for the first few weeks except waking up to go to the bathroom and going right back to bed. I also had some crazy dreams and had trouble deciphering dream from reality, every time I woke up. Get yourself some fluffy comfy pillows because you are going to need them so you don’t bump your head in the wrong spot.
        I had staples put in, instead of stitches and I was really nervous when it was time for them to come out. I think they left them in for about 2.5 weeks, but to my surprise, It didn’t hurt at all when they took them out.
        Being in the car for any long amount of time ended up making me car sick so I tried to stay away from long car rides.
        Since it was summer, I spent quite a bit of time sitting in a chair in my open garage, while my kids ran around outside. Quite a few times, it felt like I just sat out there staring into space the entire time. Again, I had my husband here to babysit me. I didn’t feel comfortable being left along with my kids for a few months. I felt like I was going to do something wrong or forget to feed them or something.
        I cried……ALOT. To understand what a big deal this is for me, you have to know, that I can count the number of times I have cried in the past 15 years on one hand. I am just NOT an emotional person. With this situation, I cried over everything. It wasn’t because of being sad, it was because I was pissed off when I couldn’t do things on my own, or figure things out on my own. I turned into the biggest baby over everything, and that really freaked me out.

        I had a titanium plate put in to replace the skull flap they took off. There was a bubble of fluid under the scalp for a good 4-5 months after surgery. I called it my squishy and would often freak everyone out by saying “Feel This!!!” This worried me a lot at first because I thought I was leaking fluid straight into the space between the plate and my scalp, but it is completely normal and should correct itself.
        Now that we are in the dead of winter where I live, I can say that this plate gets a little cold with the weather. I can only compare it to the feeling you get when you have a brain freeze from eating ice cream. It is not unbearable, but it is a strange feeling. I can also run my fingers over the plate and feel the indent where it is, as well as a couple of screw heads that are keeping it in place. I almost feel like a circus act sometimes and I am always telling people to touch it.

        I was a going to college full time when I was diagnosed, and I returned to school part time in August. I went back to working part time in September as well. Even though my insurance covered a ton of the costs, I was still in the hole about 6 grand. Things just take time and that is the biggest thing you have to tell yourself. Looking back at everything now, it seems as though my brain was just taking a vacation. Sometimes, you will just be sitting there by yourself and it really hits you that you have been through ALOT! Take your time with recovery, because everyone is different. I’m sure this goes for everyone on this thread, but we are here to help! Oh, and here is a pic of my awesome hair cut and staples about 4 days post op. You can also see the stitch at the bottom where they had taken the drain out. https://uploads.disquscdn.com/images/c06bd70132a9c250ee0102b7cde5d570c16472284f83099b8479144b12d5fc61.jpg

        • Stephanie Hawley
        • Anthony

          Stephanie thank you so much for letting me know I’m so nervous that something is going to happen during surgery or they are going leave me way worse then it was….would you just be able to tell me where your tumor was…and again thank you

          • Stephanie Hawley

            Check out my scans that I uploaded in the comments. Mine was in my left lateral ventricle, in the middle of the brain. I also found this diagram while researching before my surgery. On this diagram, the intraventricular green dot shows where mine was located. At what spot is yours at? https://uploads.disquscdn.com/images/9a547e4e3f9dfab2942c279445f63773178158de89947b80f62fd66a95bb919b.jpg

          • Anthony

            Thanks for getting back to me on the location.I feel a little more comfortable that yours was towards the middle and that’s what you experienced.My tumer is located ….if you put you finger on top of your head…it’s about two inches back and three inches down…I’m going on feb first to see when the surgery is going to be….I wounder if there is any risk of trying to put it off as long as possible…I feel comfortable what you told me but I’m really scared of something happening after reading all these posts….so enough about me how are you doing now….

          • Stephanie Hawley

            How are you doing Anthony?

    • Anthony

      I just have one more question….what were your symptoms that you were having when it all began…and again thank you for explaining everything to me

      • Stephanie Hawley

        My symptoms varied really. I had headaches, throbbing in my temples….To the point that all I could do was put pressure on both sides of my head and sit absolutely still. The headaches brought me to tears one day because they were so bad. I went to the ER and they refused to do a cat scan because there was “nothing wrong with me.” Bright lights and not so loud music would cause my head to throb. My vision would occasionally get blurry like I couldn’t focus on anything. I started developing symptoms similar to narcolepsy and I could just fall asleep in the middle of speaking a sentence. Towards the end, before we found out it was a tumor, my eyes were twitching ALOT. My hearing would come and go in my ears at random and sometimes they would just ring. I had difficulty concentrating on anything big or small. I’m not really a people person to start with, but back then I found it difficult to be around anyone because I would just want everyone to be quiet. I would have dizzy spells and times when it took all I had just to make it to the couch to lie down . I remember having a little bit of tingling in my facial nerves as well. More specifically, my chin and cheek bones would get tingly. I’d say the worst of the symptoms were definitely the headaches. Pain reliever has never worked for me for headaches so it was likely the tumor the whole time, though doctors say the tumor could have been there my whole life. I have my yearly MRI on the 26th to make sure nothing is growing back.

        • Anthony

          Wow…..I’ve got pretty much all the same symptoms except for the tingling…I can’t even stand the sound of the vacuum….thank you again and I hope everything goes well at the doctors….is there a chance it can grow back…is that what there worried about

          • Stephanie Hawley

            It was a 1% chance of getting this type of tumor in this location to start with, and an even smaller chance that it will grow back. However, if I was in the 1% to start with, it will always worry me that it will come back. My doctor told me before surgery that I will have to have an MRI every year for the next five years. That is to strictly monitor for any new growth. After that five years, I can do the MRI every 3-5 years. It’s all preventative now. My headaches are pretty much gone except when it’s really cold out. Both my eyes have started to twitch a little again but I’m thinking that may be stress related.

          • Alexis Tran

            How does it feel to be headache free?! Congrats on that! I have a lot of the symptoms, and Pain reliever never helps me either. Im sensitive to light and noise. If someone just flickered the lights on and off, i’ll start to cry. If someone just throws something at my scar, i’ll start to cry. The headache is the main thing I have in common. I don’t remember what its like to not have a headache. I sometimes get really weak, to the point where I couldn’t move, but people didn’t understand that. I sometimes can’t breathe. I feel like I’m suffocating from my chest nose and head. my right temple throbs a lot, but when it gets really bad, that’s when my left temple throbs too. BUT when I have my normal headaches it’s okay, the pressure just kind of varies.

          • Stephanie Hawley

            Hey there! It is nice to be mostly free of headaches. Unfortunately my right eyelid keeps twitching and I keep popping blood vessels in my eye. I’m thinking a trip back to the doc is probably going to happen.

          • Alexis Tran

            Oh wow, yea that’s definitely a must! I’ve recently discovered that I now need glasses and I’ve noticed my eye does twitch alot. my left eye feels very weak, but yet my right eye where I had the procedure done has a lot of pressure on it.

          • Stephanie Hawley

            Anthony, how are you doing?

  • Cindy Tesler

    Thanks for pointing out that it takes a long time to recover from brain surgery. More specifically you said that it could take months and months to fully recover. I think it’s important to choose a surgeon that makes you feel comfortable and confident in your surgery. http://www.delawaremedicalgroup.com

  • Lina Stein

    It’s a true list of what one may expect after having a tumour removed!
    I live in Ireland .
    I am 3 months gone having had a Sphenoid Wing Meningoma removed from behind my left eye..6cm x 6cm.
    Take your medication and rest..this is the most important thing,also don’t expect to get back to your “normal ” life within a few weeks.
    It’s very hard to accept what one went through with the diagnosis and shortly following physical removal to the various stages of the healing (scaring,swelling going up and down, hair loss,fatigue,anger,intense sadness,and emotions all over the place) I still think it has been a dream.. but found it was great to be able to talk about whatever was bugging me with a friend or mum (one becomes a little self obsessed..but hey..we are allowed!!) if you feel down just stay there and then when you feel good embrace it! We have up-days and those down ones and we learn how to manage these. I have discovered recently that it helps not to exert too much energy.if we try to clean the house,do laundry,cook food and entertain friends then we definitely pay for it!!!! I spent 3days in bed after last Christmas.
    I have accepted time will heal my head.
    It’s all down to baby steps!
    Thanks for this article!!means a lot!!
    Ps….have photos f the before and after scans of brain which are incredible!! 🙂

  • Swapnil

    My father had an operation of brain 4years ago. He is having mid brain stem bleed… He is totally bed ridden.. His left part of the body is paralyzed.. He don’t even speak and eat.. Please tell me… Is there a possibility of recovery of brain now??

  • Steven Beshears

    How are you now?? I had my brain surgery to remove a 5 cm menengioma in june of 2015… I’m feeling alot better now.. I’ll probably have to take Anti seizure medicine and xanax for panic attacks (from where the tumor was) for god knows how long, but other than that, I feel pretty much the same as before.. Anyway, it was amazing hearing your story, and I can vouch, all 20 things are spot on.. LOL My Email is Beshears420@Gmail.com. I’d love to hear how you are doing now… Since, I’m at about the stage you were two years ago, when you wrote this blog or whatever its called (sorry).. Thank you for sharing, and I’d love to hear how you are, and maybe even share my story if you’d like.. THank you…

    • Anthony

      I really need to talk to you about the surgery I’m going to have it’s the same as yours….was your tumor on the surface or deep in your brain

      • Sarah Rossiter

        Steven! I just saw a neurosurgeon today. I have a 4.7cm meningiona that is barely under a layer of brain tissue right about my right ear. The plan is to just remove it. They talked about the incision and scarring and cutting of the scalp. I didn’t realize the recovery time was going to be so long and I’m hoping that depending on the type of mass is what changes that… however your comment doesn’t instil any confidence in me… good luck with yours Anthony!!

        • Anthony

          Thank you and please let me know how you make out

          • Sarah Rossiter

            I had my surgery February 21st. The first night was painful but since then I’ve had pretty much no pain. Staples came out two weeks after. I basically slept the first few days straight and then was good to go. It was a cyst that was just fluid. Went back to work 4 weeks after surgery. Incision is pretty much all healed up. Just a pink scar hidden under my hair now.

          • Marco Andy

            if the person no family members and relatives how?? How taking care on him?? I have a friend last week go for surgery. Now I can’t contact him I not sure his condition now. So he got any assist helping him? Taking care him for the recovery period of times?

        • Anthony

          What did the doctor say about your recovery time…did he tell you what to expect afterwards

        • Kepi Bear

          My MRI showed I have a brain tumor and like you is over my right ear and good news is that the mass is not touching the brain, it is between the layers before the brain, the mass is about 5cm. Dr says I should have a quick recovery. I am waiting for the follow-up with my Dr in July so I am hoping to get this thing removed at the end of July or early August.

          • Crazy55 Rider

            My wife had the surgery for a 4cm Meningioma on June 1st 2017 under her frontal lobe it was going to take her eyesight and eventually kill her so of course we got it removed. She spent 11 hours in surgery 42 days in the hospital care with rehab so she could come home. Right now she is sleeping still at 7:24 a.m. as I right this. She like all people need lots of love and helpful understanding people around her. And to the bystanders don’t make them feel stupid because they forgot what you just told them. Remember they just had there brain manipulated by a group of surgeons so smile and give them a hug.

          • Kepi Bear

            Wow! Thank you.

          • Vicki Barber

            My 10 year old grandson just got out of surgery and is now in recovery. He has a rare brain disease called MoyaMoya. This is his second surgery in a month. He has had both side of his brain operated on. The amazing surgeon opened up the hundreds of blood vessels. This disease will not go away but now he will hopefully not have anymore strokes. Thank you for your article. My grandson has had many of the things you talked about.

          • Stephanie Hawley

            Vicki how is your grandson doing?

        • Monique Robinson Summerfield

          I have a 5cm meningioma behind my left ear, and they made it sound very simple (“just scoop it out”… I was thinking life would be sort of back to normal in a couple weeks…did your doctor talk about the radiotherapy treatment option at all?

          • Sarah Rossiter

            They didn’t talk about other options because they couldn’t be sure what it was made of and so therefore they didn’t know what would effect any other option would have until they actually got in and got a sample. (I googled and asked about what seems like 100 other options instead of surgery). With the placement of it and I guess being young, they only had to drill one hole and then slot down from it so I’m only scarred about 1 in across ( still crossing my fingers more hair will come in!) And then from the top of my head, down to my ear.

          • Monique Robinson Summerfield

            Thanks Sarah! ( how much of your hair did they have to cut/shave? isn’t it awful that I’m thinking about that? 🙁 )
            Thanks for your response!

          • Melissa Dailey

            Monique it depends on your surgery. For mine I had to shave my whole head. It’s terrible but it will grow!

          • Robin Kruzewski

            I hate losing the hair too! It takes so long before I have a normal haircut. Before that happens I wear a scarf but it makes me self conscious.

          • Ting-ting Chang

            Hi, Monique,
            I have a 3.7cm meningioma behind my left ear too, My doctor suggests to remove it and sound very simple too. May I ask how is your recovery? Any complication(s) have you experience? Thanks.

          • Fash

            Did you have the surgery? I did. If you have any questions — feel free to ask me. I had a meningioma removed on June 12 (same location as an acoustic neuroma). IMO surgeons DO NOT do enough to prepare patients for post-op.

    • Armen Gharibian

      I had brain tumor surgery on Feb 13th 2017 and was feeling great for three days but now there is the pain,I had brain tumor when I was 12 years old in London England and was removed by radiation and all went well and now
      after 37years it’s back i can’t stand this pain

    • Virg

      Hi I also had the same operation as you I’m doing okey I guess I get a lot of pulling in my head where the invention is I guess it’s normal now I developed depression and have panick attacks they are awful now I’m going to see a specialist for two months I only took Tylenol for pain the pain is gone.but I got the depression my operation was on Jan 10/2017 let me know how you are good luck

      • Everywhereist

        This sounds so similar to my situation – lots of pulling, but it will get better! I know it feels strange, but try massage the scar- it helps break up scar tissue!

      • Claudiebo BookieX

        Hello I had my surgery on Aug. 17,2017. I went home with tylenol but I don’t feel any relief from surgery, there’s always pressure that is unbearable, my neck hurts like crazy, I can’t sleep on my left side not on my back, I could barley sleep on my right side. I sits up most of the night because of the pain, it always feels like water in my ears, and my nose leaks fluid a lot. I don’t know how much of this I can take.

    • Zindagy Zinda Raho

      I had my brain tumor removal surgery April 2016 and I am still trying to recover. I have many panic attacks and two seizures since the surgery. My ears became really sensitive that I can’t handle even small sounds. I want to talk to people who have also been through this. Right now I don’t know anyone and I could use the support. Please email me at pak_bibi_lucky@yahoo.com.
      Thank you

      • Zindagy Zinda Raho

        my cell numbr 4434843391

    • Chris Hoopengarner

      I had a 8cm diameter meningioma. The surgeon told me I had it since I was 7 years old . It had grown in my noggin for 16 years I didn’t even know it. I went into work one day and lost all vision in my left eye. Thank god my vision came back in my left eye.

    • Stewart Hughes

      hi, what caused your “menengioma”? have u taken psiquiatric drugs?

  • Anthony

    To anyone out there that had brain surgery with a tumer in the middle of there brain I’d really like to hear from you…I have a three and a half center meter menigeoma tumor in the middle of back of my brain and going to be going for surgery and I’m so afraid of the outcome….is here anyone out there that can make me feel at ease….please and to everyone who shared I really appreciate it thank you…..my number is 609-752-5505

  • Anthony

    Can you explain how you felt right after the surgery and what to expect…I’m going soon to have surgery and I’m so nervous….thank you

  • Anthony

    Can you tell me where your tumor was located in your brain

  • Anthony

    Can you tell me what you felt after surgery and what to expect…

  • Anthony

    Can you tell me was your tumor on the surface of your brain or inside the brain

  • Anthony

    Can you tell me where your tumor was located in your brain

  • Anthony

    Can you tell me where your tumor was in your brain and what should I expect after surgery

  • Anthony

    I’m going to be going for surgery for the same thing…can you tell me where your tumor was in your head and what should I expect after surgery

  • Danielle

    I had a brain tumor as well and had it removed back in 2011 and know I’m haveing so meny problems I have fluid build up in my brain that’s cuaseing my veins in the back of my eyes to swell up i already had 3 spinal taps done to remove the fluid and guess what I belive it’s from the brain surgery.any one eles that had a tumor removed haveing this problem to??

    • Alexis Tran

      Idk if I’m having any fluid build up because I haven’t seen a doctor like that. BUT I do have headaches on a daily basis, just different levels of pain. Sometimes Its to the point where I feel as if I get no oxygen in my chest nose and head. My headache spreads from the right side (which is still numb after 10 years) to the left side of my head. It’s so annoying. Could the surgery have lead to migraines? or something? because I have done research, and I think I may have chronic migraines or Hemicrania continua. I am sensitive to light and sound. I tear up, I even start to cry if it gets worse. My temple and scar starts to throb.

  • Cathy

    First I would like to say thanks to all of you for this post, and
    also for the person who have put this together, I am not computer savy.
    anyway, my mother had a blood clot in her bran and it had to be removed.
    surgery went well, she was recovering well, then the bleeding started
    again, they had to go back in and redo, then she ended up with a stoke
    as a result and seizures., this has been very painful for me, you feel
    so alone., no one has been able to provide me with the afters, until I
    read this post and i will be forever grateful. Now, my biggest
    question…”The Pain” when does it end…if never…how often? is it
    everyday, while I know everyone is different, just want to know
    something, my mother’s surgery has been over 3wks now, she is in rehab,
    and is suffering with pain, moaning and groaning even with the
    medications and some hullucinating also. as mentioned is other post.

  • Lavinia

    I had all those the weird but cool one was the smelling and tasting one. I wanted in and out, fired pie, Buffalo Wild Wings, you name it and I refused it all because they all smelled gross. Ha but man my surgery was September/2015 and half my head is still numb and my incision still itches like crazy 🙁

  • Anthony

    Don’t be sorry…wow it sounds like you went though a lot and still are…thank you for explaining your experience and keep me updated on how your doing….I’m going to try everything I possibly can to not have brain surgery like radiation and kemo….it sucks I found a trial that would exept me but my neurologist said it’s up to the surgeon to decide and I see him on the first…. I hope he will do it…..I’ll tell you I found the American brain institute of America and they were sooo helpful with resources and a mentor you should reach out to them and they will hook you up with someone who’s going threw the same thing as you….stay in touch

  • sandy

    Nice article.. As my mom got through sane phase.. I can relate to it

  • Tornike Gogelia

    I felt happy and hopefull reading this post. I’ve had a brain tumor surgery 2 times and each time i felt different. first was in 2005 , when i was just 11 years old, in that time i did not realized what happend to me, but now when i had second surgery three monthes ago, i feel that it is a lot more painfull (both in physical and psychological way) than in 2005. I’m gratefull to the people who helped me and still are helping me to deal with my “situation”, but there are also some people who really do not care about me. i do not blame them, but it is very painfull to me , when my two childhood best friends did not even called or messaged me after 3 monthes. till this day i was mad , but when i read this post i realized that you are right : “People in your life are going to react to this in different ways”.

    • Tina Northwest

      Not unusual, Definitely my son is seeing their are those who actually drop off from his radar and those who have stuck by him. This is the nature of human beings. Take Care.

  • Tina Northwest

    Thank you for sharing and thank you for all those whom followed and have also shared their experiences. My son was diagnosed with a grade 2 benign glioma above his left eye on the temporal lobe and had it removed a month later on Dec 30, 2016. It was the most frightening thing a mother could experience. Then came another diagnosis right after surgery that the tumor was tested and they found an aggressive cancer. 3 weeks after surgery the biopsy report came in and thank goodness the first diagnosis was the accurate one. Doctors can be wrong too. Prayer, prayer and more prayers were held by many. My son is recovering very well and we are learning as we go. These postings are reassuring and I’m glad for the reaffirming statements of giving the healing process time has been reiterated. I did read the statements before his surgery and took care of my son keeping in mind the list created. Thank you. I will continue to follow. God Bless!

  • Tina Northwest

    You have been through a lot and survived and still have the strength to share your experience. Continue finding new strengths to get you through the tuff times.

  • Frederic Van Den Houte

    Firstly, thank you for your article, it made me give the courage to share my experience.
    I had an acoustic neuroma removed 6 months ago by micro surgery and the middle fossa approach was used. The operation was successful meaning the tumor was completely removed which I am very thank full for and I hope it there is no re-growth in the future,
    I was booked off for 7 weeks after the operation and the time consisted of sleeping, waking up with a severe headache, eating something, drinking my medication and going back to sleep. The severe headaches subdued after 6 weeks and I experienced sharp shocking headaches that used to come and go.
    I also experienced complete facial paralysis on my left side after the operation which has gotten a lot better but is still not what it should be and I still have a numb feeling in my face and when I squeeze my left eye closed the whole left side of my face feels like it is going into a muscle spasm and when I chew my left eye tears constantly and the paralysis is still quite noticeable.
    Due to my balancing nerve being severed during the operation my balance is still quite bad. I did go for vestibular rehabilitation but stopped the rehab as it tired me out completely and I didn’t have any energy left to do my daily functions. According to the surgeon I should have continued with the rehab as I need to train my brain to use my remaining balancing organ to balance my body as my eyes are currently balancing my body which also drains my energy but till today I do not have enough energy to continue the rehab.
    I had 94% hearing in my left ear and 40% hearing in my right ear before the operation. My hearing in my left ear dropped to 20% after the operation, I knew there was a possibility that I would have no hearing left in my left hear after the operation so I am very thank full that I at least have some hearing left. I am now wearing hearing aids in both ears which are helping quite a bit.
    The thing I am still struggling with the most is the lack of energy, fatigue and concentration. I have always been a very active person and I cannot sit still. I am now very limited to performing any physical activities as they drain me completely. For example brushing the pool for 15 minutes will completely drain my energy and I will sleep for 2 days, day and night and only start feeling normal again a week later. I am now avoiding any physical activities were I need to bend down which is helping.
    I am a computer programmer and I sit in front of a pc the whole day. This also drains my energy levels and my concentration is definitely not what it used to be. By the early afternoon I am exhausted and I have to take a 2 hour nap as soon as I get home to regain some energy.
    I did a lot of reading before I decided to go for the operation and I do not regret my decision to have the tumor removed. I just whish I knew that the recovery period can take up to 2 years or even longer. I am staying positive and still hope for a full recovery as it is only 6 months after the operation, I still need to accept my limitations as I am still over exerting myself which isn’t helping the recovery as it messes up my balance completely and worsens my facial paralysis which is quite demotivating at times.
    I also want to mention that there are very few people actually understand the situation after the operation as people seem to think that because one is back at work and looks normal everything is back to normal and one should perform as if nothing is wrong which is definitely not the case. Initially my boss was very accommodating but that has changed and I am expected to be as productive as I was before the operation which also adds a lot of stress to my work environment as I am well aware that I cannot be as productive as before and trying to do so I am again over exerting myself which is again hampering my recovery.
    So yeah that’s my story. I wish to conclude by saying that it is not an easy experience and a lot of adjustments to my lifestyle were needed but I survived and it made me a stronger person. I used to be very conscious about the funny looks people gave me due to the facial paralysis and my balancing problems and I avoided public places but these don’t faze me anymore.
    I also want to thank my wonderful family and friends that I still have for all their support as this made a world of difference helping me through this difficult time.

  • AVI

    Dear frnds
    I just had my brain surgery 3 weeks ago on 28th jan 2017. Keeping in mind that everyone’s situation is different, I would like to share my experience simply surrender yourself to the supreme power thats all he will take care of everything irrespective of your age type of surgery or worst situation if any.
    Whatever I read from internet was very shoking and scaring too. But by the glory of lord Krishna I M fine and ok. Recovering well and doing all things independently and normally after 3rd wrek of surgery.
    So don’t worry if there is Hari (Lord Krishna.).
    Simply chant the name of God you belive like:-the mahamantra of ISKCON

    Hare Krshna Hare Krshna
    Krshna Hare Hare||

    Hare Ram Hare Ram
    Ram Ram Hare Hare||

    हरे कृष्ण हरे कृष्ण,
    कृष्ण कृष्ण हरे हरे|
    हरे राम हरे राम,
    राम राम हरे हरे||

  • Bev

    Hi. My hipusband had tumor removed yesterday. It caused some permanent blindness in left eye. He recovered really well but hallucinations have started. Did yours go away? On their own or with meds?

  • David

    I have a optical sheath frontal meningioma that I will be having operated on come mid April 2017. all the comments and the advice I’m reading here is very helpful to kind of get my head wrapped around it. Thank you. Wish me luck and good luck to you all for your fast recoveries.

  • Alexis Tran

    I just want to know, do you have like horrific headaches? pretty much like migraines? I’ve had my brain surgery done in 2008, I was in 5th grade. They said it was a size of a Golf ball or tennis ball. I can’t remember.BUT Ever since, I’ve always had headaches, EVERYDAYYYY. Just different levels of pain. I’m super sensitive to light. If someone were to flicker the lights, i’ll start crying, or if the headaches are just unbearable i’ll cry. If someone threw something light like even paper or a pencil at my head and it hits my scar or in that area, especially the temple, i’ll start to cry. I’m also sensitive to the smallest sound. Crickets, clicks from a mouse or keyboard, even the smallest sound from a person or whispers, My head vibrates and just suffocates.
    They go from my now normal headaches (because I’m used to it) to the point where I feel as if I get no oxygen in my chest, nose or head. I’ll start to cry or tear up, I’ll get super dizzy and even feel weak at times. I just won’t feel like moving, and my temple and scar starts throbbing. LOL. honestly. I would have been better off with just A Brain tumor and seizures.

    TBH, I’m surprised I can still play the piano, and learn to play different instruments and do different activities like dancing and tumbling (which are flips and and tucks and rolls). I still get really dizzy, but It’s cool or whatever. School was hard to catch up on. I just started to take up violin lessons, and my instructor tells me I’m a pretty fast learner. So for all you weird people who had brain surgery or are having it done, We are not dumb, or weak. I think having our brains messed with makes us smarter in a way, and just stronger. ;D

    Honestly if someone could help me out and tell me why my headaches are still here and why they get so bad, I’d appreciate it. My email is AnhT.8239@yahoo.com


    I had six brain surgeries within a six month period . You do get memory loss and depends where the tumor is is the brain its hard to know what kind of deficits you are lookig at .
    Don’t beleive the hype about this issue . I was walking talking slow at first and with some memory loss long and short memory in some cases this is good stuff .
    My tumor was on the left side so I have seizures mild ones and I live a normal life . I was an army ranger in the army when this happen to me . With help and a little push from f Emily and friends a full recovery is an easy goal to get.

  • Abbi

    HI guys 🙂 loved reading all these comments about your own surgery. I’m having my tumour removed on Tuesday and I am absolutely cacking it! The steroids they give you to take apparently make you spotty? Has everyone had this and after you stop the steriods do they go? I no this sounds a vain question but everything else has been answered in the coments :)! X

  • My son had Right Temporal Lobe Tumor none malignant =so happy. his girlfriend was toxic and controlling , So for his sake I allowed things to unfold to what I saw to his best good outcome, he made it through, And I was able to send his flowers and speak to him on the phone a few days after the surgery, he was out of it, But remembered me , he was no longer calling me mom But Mother, that was January 2006 , he is a true champion he has earned his degree in Computer Tech, and relocated to be near his estranged father who has helped him with a home to live in and some responsibility for the property , his seizures was very frightening at one point several a day, In the early stages but now 11 years later he is still progressing , memory is till a challenge but he has a self help of writing down what is required and when, I gave him the space to be his own self ,I used distant healing and detachment meditation ,So thankful for all who made it through the very deep terrain of Brain tumor surgery and what ever is required to know we have internal healing energy ,I guess the most painful for me was watching disability help denied, and the Toxic families he was seduced into force him to lift heavy things and do work to early after his surgery ,But I finally helped him get out of it and move back home,

  • Keith

    Excellent post. I am sure will help many. My Father-in-law just had surgery (twice) and we are waiting and praying for recovery and preparing for the future. Thanks so much for the post and good luck and fortune for all who have had this happen to this. God bless you all.

  • Lindsay

    I had a large meningioma removed 6 months ago and I am just starting to feel good again. Be patient and stay positive! I have no pain or headaches. Took a long time to regain my strength. This article is so accurate especially the part about supportive friends and those who disappeared. The surgery gave me tremendous faith and a whole new perspective.

    • saffiregal

      Me too Lindsay. No pain or headaches, however right side soreness where the meningioma was removed almost three months ago. I couldn’t believe that alien was growing in my brain for 20 years plus. I get sleepy from the anti seizure medication. I still have numbness and tingling in my left hand. With ongoing therapy I hope it goes away forever. I went for an MRI last week and will get results soon.

  • Brian Eden

    I realize that my post is many years later, but your message struck such a chord.
    My wife is about 30 days post op from removal of a massive, benign meningioma from underneath her frontal lobe . . . some kind of record book size, leave it to my girl.
    As my wife’s caregiver, fierce protector and champion I have felt an increasing sense of distance from most folks we know. They have been great on the whole, but through no fault of their own they just have no idea what we’ve been though. They ask me “how are things?” and I think “well, I’m not sure what size adult diapers to buy for my girl, given he recent loss of GI function and overall malaise and for that matter is one brand more absorbent than another?” I just say, “Great. We’re out of ICU after many weeks and making progress in rehab.”
    Your post brought me to tears just knowing that other folks out there know what I know and feel what I feel.
    All the best to you and yours and thanks so much for sharing.

  • Heather Hofmann

    I’ve had 10 brain surgeries since 2002… most back to back, and now, I find it hard to smile. How can I overcome this?

  • Chris Hoopengarner

    About three years I underwent a 32 hr long craniotomy at WVUH for removal of meningioma. The surgery started on April 12th 2014 at 8am and I didn’t come out until April 13th 2014 at 4pm.The tumor was 6-8cm in diameter. My neurologist/surgeon told me face to face I had the sob since I was 8 years old, didn’t find out about it until I was 23 years old. I fortunately went with a high level of confidence. When I woke up in the ICU I was able to speak to my friends and family. I had trouble trying to sleep I was awake for a solid 10 days. I had many moments of confusion. Was speaking of crap I can’t even remember. I was having severe memory problems when my blood pressure returned to normal. One of the weirdest things I noticed is had cravings for foods I used to hate. My surgeon was telling me they may need to graft an artery from my left and then use it to replace a section of my main cerebral artery. Later that day the doctor told me they have no need to graft an artery. My body was several steps ahead and had built new blood vessels that went around and through the tumor and connected to the main artery.I spent 13 days in SICU. I was released for two weeks of PT. I’m just glad my surgery was pain free, except for my right shoulder. The only bad set back I have is partial blindness in my left eye. A small section of my left eyes field of view looks like a TV that has no signal.

    I spent time in the hospital from March 31st 2014 until April 26th 2014 After the stay at the hospital I took only 6 weeks to completely recover. I was back to work on June the 7th 2014.

    One thing I can say is if you go through a brain surgery. You will be an emotional wrecking ball. There will indeed be tears of hate and disgust. Tears of love and joy. I actually had moments of hate and anger toward a couple of the residents for calling me mentally retarded. Literally wanted to reach into the sharps bin a stab the sob.

  • Brenda Eubanks

    Hi, I had my surgery 30 years ago. I was 14 at the time. I had malignant brain tumor. Surgery followed by 6 weeks of cobalt radiation treatments. I am completely cured. But I have an issue with scabbing. Yes even after 30 years, I still scab in my scar. Since I haven’t seen any of my drs in years,( Don’t even know if there still alive), I was wondering if this is normal.

  • Rosaland V. Moore-Johnson

    I totally agree with Rose, should be attached to discharge instructions. Info was humorous, which is good for the soul, yet very helpful.

  • Wendy

    So my story goes… 3 weeks ago I flew from TN to NOLA to be with my husband for Valentine’s Day only to wake up on 2/20 with a crap load of staples in my head being told I had to have brain surgery. Apparently when I landed on 2/13 the last memory I have of my husband picking me up at the airport I had a massive seizure (never had the first seizure, only panic attacks) , a tumor was discovered, then I’m told I had emergency surgery to remove the tumor. I have absolutely no memory of this & it’s eating at me, how do I go from a strong wife & mother one day to someone who can barely take care of herself the next & not know how I got there. So now I’ve learned I will need to start radiation therapy so that the grade 2 meningioma spindle cell doesn’t return. I’m having such a hard time with this I feel like I’m living in some sort of fog all of the time, the headaches are killer, it takes me so long to complete the smallest task, I have a constant swelling in my right temple , confusion, I’m so tired all of the time. Will I always be like this? Anyone have any tips that might help? Thanks for listening

  • Cristiana Ramos

    Wow these words have been the most comforting thing I’ve heard since my surgery I had my tumour removed 2 weeks ago and I’ve been freaking out about everything and anything! Seriously googling everything to see if I’m going to make it another night !
    I just recently lost feeling in my whole left side of my body and that’s what led me to this page because no one can tell me what’s going on like will the sensation come back ? Will I be able to feel my partners hand holding mine ? Will I be able to get pinched by my younger siblings and actually feel pain coz right now I feel like super girl !
    I just want it to all go away but it’s only been 2 weeks ! Do I need to get help? I’m only 22 and right now I feel like I’m not going to make it through this until I read your post !
    Thank you so much

  • Richard Thomas

    This was a cool read, thanks for sharing. I am doing some research for a pamphlet of poetry I am putting together about my experience having a brain tumour when I was a child. Do you by any chance know the name of the medicine they put you on after surgery that makes you go ‘loopy’? I remember it made me feel totally spaced and revert to being a toddler again. Any info you have would be hugely appreciated. Cheers.

  • Maria R

    This is fantastic. I can’t thank you enough!

  • Richard Thomas

    I’m not sure my last comment posted. So trying again. This was a great post which I am sure will continue to benefit a lot of people. I am writing some poems about my experience and I am trying to find out what drugs I was taking afterwards. I was ten at the time and remember feeling like I had reverted to being a toddler, and feeling very confused and floaty. Any ideas would be hugely appreciated. Something is telling me methadone, something else is telling me codeine. Maybe it was a combination of the two. I can’t seem to find any information online anywhere. Thanks in advance to anyone who can reply.

  • Doug Hart

    And ants! there were winged glow in the dark ants everywhere. They pushed some morphine in and they started popping out of the air around my wife’s head.

  • Doug Hart

    I had my left side paralyzed and had to learn how to walk and dress my self again. I also had a thing called left neglect where you can’t see out of your left eye but your brain fills the blank in with what it thinks should be there. You do things like stack dishes all to the right side of the cabinet and if you drive you will pull out in front of cars making a right turn. I started driving with my window down so I could her them coming but in retrospect I probably shouldn’t have been driving at all.

  • Jessica Kenser

    I just have to say thank you! I have read and re-read this post a good 30 times since my brain surgery December 30th. I had a third of my right temporal lobe removed.. who needs that part anyway? Your post is spot on and really refreshing. It is so nice to know that I am not alone. I had never had any surgery prior to this. It has only been 2.5 months and I am constantly getting frustrated with myself for not being 100%. I am a registered nurse and am also working on my doctoral degree to become a nurse practitioner. By the grace of God I was able to resume classes 11 days after surgery and was back to work by 8 weeks. I still feel like I have a fog over my brain that I am hoping will lift any day now. I still cannot believe I had brain surgery….

  • Xaphyre Ansar

    Thank you so very much for this article!! On Sunday 3/19th my mother complained of a severe headache that made her head feel like it was about to explode, she felt her body weak and could barely stand the terrible pain. The next day she went to work, and when she came home for lunch she says “I felt dizzy and the room went blurry, then I started to shake violently and my legs and arms lost all strength and I fell to the ground”… she recovered enough to drive herself to the nearby ER. At first we thought OMG she’s had a stroke! But the initial CT Scan showed that the culprit was large tumor on the upper front region of her brain (we later found it was a 3” meningioma). That very minute she was told she would have to have surgery right away since the tumor would cause seizures if left alone. That’s when it dawned on me that what she’d had earlier that day was a seizure. It is Thursday 3/23 today, and she has just come out of surgery. I have been doing some research into this subject, and that’s when I came across this article… I cannot tell you what a blessing it has been. I read it and then I read it to my mother the day before her surgery, and explained to her this is an idea of what she can expect afterward. She is a very strong and very active 70 year old woman, and having spent a day and a half in the hospital bed already had her antsy, and unhappy because she was “just lying here not doing anything!” so I felt it was crucial that she understood that she would not be able to just get up after 3 days and just get back to her garden and her work as usual. It has been a Godsend for me as well, because now I too know what to expect and it gives me a more empathetic insight into what SHE will be going through and needing from all of us.

  • Kristi Gant

    Thank you so much for this. I am going in for a craneotomy on Friday and I wanted to be aware of how recovery might go at home after the hospital stay. This gave me hope.

  • Lee Banks

    My daughter who is four years old had a brain tumor removal recently near her cerebellum it was benign. It’s been two weeks since surgery and all is going well except her sensitivity to light and she kept complaining her eye I tches and she got it infected in her corner lid. Now she complains that when she feels water in that eye and it hurts. She does have allergies and takes Claritin. She is currently on steroids. Can steroids cause issues with itching or picking because if she’s not picking or rubbing eye she’s picking nose and now it bleeds from her constant picking.which is not normal behavior for her. She has not shunt in and had a tube on top of head that drained fluids before and after her surgery and did well after removal. I’m just scared because I believe a lot of her swelling was in eyes before and now her eyes are readjusting. Just a worried mom because I have no one to talk to who have been thru this or have a child go thru it

    • Lee Banks

      Her eye itches sorry typed too fast

  • klarpi

    I just had my operation last march 27, 2017… Meningioma 7cmx5cmx3.5cm! Removed the whole thing except for a small piece which is wrapped in a vein… They have to leave it for fear that it might endanger my life. Anyhow all is well with the operation but i still need to go to therapy bcoz my foot is still not moving. Everyone was amazed how i am recovering… Still with headaches but it feels normal! Experienced a few of what’s listed in your blog…

  • Kathy Boot

    My husband had a cancerous brain tumour removed 12 days ago.the tumor was removed in 8hrs no complications.he was released 36hrs later with no restrictions..i was sceptical of his coming home so soon after surgery but appatently hiz physio therapist & one of the surgical team deemed him safe & able to come home.from thre first day he was different.
    His personality was definately not yhe same but i attributed this to the surgery..as the days past he eas hyper beyond belief..he would be up from 8a.m. intil 2 or 3a.m. he became increasinly aggressive until today 11 days afyer surgery i had no option but to call the police..for an unknown reason he went into a rage..his eyes were bulging , he was screamong,swearing * thteatening.he had progressively reached this state..i had planned on calling his dr tomorrow(mon) but now he iz at his friends house because the police feel he’s violent & should not be here..i am sitting here alone missing the man i used to know..he’s in there somewhere im sure..i am calling his drs in the morning..what on earth is happening.

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  • Monica Fox

    Thank you all from my heart for taking the time to share your personal experiences. This information is vital for family to have some insight on what to expect so they can be helpful and patient even a year later. Thanks again!

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  • ralphpetrillo

    Don’t forget many years later you will try to remember how you used yovthink. It is amazing how long it takes to recover. Then there are so many other curve balls. The deception by others to tell you are normal.

  • Matt Ramsey

    I lived for 16 years after my 15th avm hemorrhage, exposure to nearly-lethal meningitis and life-saving craniotomy without realizing that I had a damaged short-term-memory.

    I was 15 when my giant stroke et. al. occured, in 1987, and when I was mainstreamed back into public high school in the fall, I knew things had changed; but, I never suspected that one of the alterations had altered the keeness of my short-term-memory.

    I graduated​ high school after taking an extra year, then dove into college. Due to varying degrees of success I experienced, I skipped around, from school to school, and took a degree in Creative Writing after 5 1/2 years. Poems, especially, I could write, like nobody’s business.

    But, with a degree in Creative Writing, I was hard put to find work, due to my content-area/general education requirement classes’ having dragged my GPA down.

    Then, eventually, after having returned from the West Coast, I gave Writing Tutoring a whirl, instead of focusing on Writing, Editing and Proofreading and, to my amazement, tutoring writers suited me, perfectly.

    The fact that my crystal (long-term) memory had stayed as strong as it had been, before my near-death, made tutoring, mentoring and writing about things I’d learned, long before, quite easy.

    I tutored for one year on the community college level at 3 different schools, then moved to the university level, when the US economy got bad enough to relegate me to working too few hours.

    I worked as a writing center tutor and tutor of student athletes; then, settled in as an athletic writing specialist, having been granted probationary acceptance to school.

    In order to have extended time for retaking the GRE, I had to be retested and, upon the completion of the last battery of tests and having my scores tabulated, it was let know to me that the inherent discrepancy between my scores that were short-term-memory-contingent and those scores that weren’t was so vast that I would definitely receive the maximum, allowed accommodation.

    Then, as I walked out the door, the tester said, “you might want to try using voice recognition software”.

    I was able to substantially re-strengthen my short-term-memory, through the use of:
    1. A PC
    2. Microsoft Word
    3. Dragon NaturallySpeaking!
    4. A digital recorder
    5. A USB cord
    6. My PC’s USB port

    Please contact me, at: http://www.facebook.com/mattramzzz1971, mattramzzz@comcast.net or 443-413-2510.

    My blog is located at: http://www.mattramzzz.wordpress.com/about

  • Joe Y.

    I had a suboccipital craniotomy to remove a small tumor from the 4th ventricle in my brain on March 22nd, 2017…so now, almost 8 weeks post op, I feel like I should be recovering faster. I’m 36 years old, I am in relatively good health and very active in my lifestyle. I do construction work for a living. This list about what to expect after brain surgery is so accurate that it’s almost creepy, and I wish I would have found it sooner.. anyhow I’m just posting my experience for others to read and hopefully if someone has any input I would really appreciate any insight. I feel like I should be normal again, yet I have a continuous headache pretty much since the surgery. It varies in intensity and location but never completely goes away. On April 20th I went to the ER and stayed for 4 days, they suspected meningitis at first due to surgery but all the cultures came back negative and after being treated with antibiotics for 2 days I bounced back surprisingly quick, too fast for it to be meningitis. Then again last night I went to the ER, with a headache that has been steadily been getting worse over the past 5 days. using the pain meds and muscle relaxers they sent me home in March with provided almost no relief. They did blood work and a CT scan and all looked normal, they just sent me home with a stronger pain med. Frustrated because I wish it was something they could pinpoint and fix, ifeel like the pain med is just a band aid. I am struggling with a bit of anxiety and depression from all of this, it’s hard not being able to do the things you used to do, do the things you want to do.. maybe I’m just being impatient with myself, or maybe a continuous headache is just a part of life now? I haven’t had to live with a lot of pain long term until now,. Does it get better with time?

  • Sharon Bowman Herrington

    I had a brain tumor removed 106 days ago, I am still recovering. Things that were so easy before are not now, ok I am not happy about that. Thank you for sharing, every thing you said, is so true. You are never prepared, for a brain tumor, and getting my family prepared was the hardest thing I have ever done. I have a 13 year old boy and he fell a part. I really had to help him and talk to his teachers, coaches and friends to make sure they knew what was going on and that they would support him dearing this time in his life and they did. I have older children in there mid 20’s and a wonderful husband and they really helped my youngest son, and reassured him he was and never will be alone. I am getting better everyday. I was in surgery for 13 hours and 5 day later I had a link out of my left ear and the doctor had to go back in and fix it and that was a 5 hour surgery and they had to remove my ear drum to fix the link I was in the hospital a total of 18 days and I came home from the hospital and had to go back cause I got the flu and I had another link cause I cough so much. I am so grateful I am still here, I saw my youngest son turn 14 and the other son graduate from college 2 weeks ago I was not sure if I would see that. all I am saying is I know it a rough thing to go through but be strong, and pray a lot and don’t be afraid to ask for some help,

  • Zindagy Zinda Raho

    Can I talk to u.i need help.how u feeling now please contact me please

  • Vika

    Hi. I had my 4cm meningioma removed on 2017 March 30th. I had also an edema. Doctors didn’t give me steroids, so three weeks later I had 1 minor seizure and 2 very painful ones, where I lost my conciseness. I went to the hospital and the CT revealed that my edema got a bit bigger since the surgery. My doctor put me on steroids for 3.5 weeks, did a Ct scan after one week using steroids, and my edema got a bit smaller. I’m waiting for my MRI which should be done sometime in the mid of June. Physically I feel fine, but at least once or twice a day I experience anxiety and panic attacks, that I’m having a seizure again (I’m on 250mg of lamictal). So far no seizures, so I’m hoping that my edema got smaller ( since apparently it caused seizures). I was taking 0.25 mg xanax occasionally, however I don’t want to use it too often since it’s addictive. Did anyone else experienced something like that? ( sorry for my English, I’m from europe)

  • eva jani.

    I had an emergency brain surgery about a year ago and while I was doing some research on the affects the surgery would have on my immune system ( which I’ve gotten sick like,, a bijillion times since surgery ), I can honestly relate to every single point on this post. Thank you for giving me something I can truly relate to because hey, none of my friends have had brain surgery, so I feel kinda outcasted.

    • Vika

      Have you experienced any seizures after the surgery?

  • Usha Krishnamurthy

    I had my meningioma surgery during 2012. Its been 5 years. I fully agree with u. even i get panic attacks and seizures now also. I cant handle even small sounds. Some times the seizures are so severe that i go blank. Someone has to hold my head hard rather press it hard. once the cramps is released then i am ok. but will be fully tired. Have to move on thats all.

  • Melissa Dailey

    I’m in the hospital with head pain after day 6 from my surgery so I googled “pain after brain surgery” & this article came up. Boy, I’m glad it did. I’m crying from pain & discouragement but this article helped to slow the tears. Thank You, Melissa

  • Susan Till

    I had brain surgery Dec 16
    2016 the week before Christmas. I didn’t have a tumor but I had a blood clot that went way wonkie. I still have pains in my head from when the Neurologist put my head back together.I have a picture on my phone where my head looks like a softball from the stiches from the second surgery. I wish the doctor would have told me of the possibility of stiches instead of staples for the second surgery. They where a bitch to take out. And yes it’s been 6 months and I still don’t feel like me.I still have problems with noise .

  • Lawrence Collins

    Chuckle…had to laugh at #6. My wife was incredibly cranky after surgery, but her sense of hearing was magnified. I was sitting next to her bed (like any good husband would), and she got really, REALLY angry at me for “breathing too loud”. In retrospect, it was funny. At the time, all I could think was, “How do I breathe quieter?”

  • Andie Painter

    Thank you for writing this my daughter had brain surgery a nearly a year ago to remove an anterior Venus malformation which had haemorrhage. She has now had two more surgeries since last August 3 in total she’s exhausted and in pain…. and there is no information anywhere on how to help! She’s only 15 but I am going to share this with her, despite the age gap! Thanks again x

  • Thanks for sharing. My father goes in for surgery next week and I don’t know how big the mass is yet, but I’ll probably share this with my mother. All the best to all those going through or gone through brain surgery.

  • Dave Jenson

    Wow. There are folks out there that know what I feel like. This is amazing. Thank you for being there. I have been blessed beyond belief and I am in and was before the surgery in excellent physical condition, Thank God. I would never have made it through. I am a Performer. Lead Singer and Rhythm guitar for the band Phoenix Rising out of Salt Lake City and my day job was a lead fabricator for Raw Tin Garage . Before my event. We performed a lot for a Non signed band. sometimes three and four times a week and we had been doing this for almost four years. Well, we were touring in Idaho Falls Idaho playing at The Roadhouse Saloon. one of my favorite venues of all time and we finished the weekend right. Great Performances and Great Crowds. we always played Friday and Saturday nights out of town and finished up loading and getting set Sunday Morning. Dale (our Bass player) and I woke and rose around nine Sunday and went down for coffee. we sat outside the cafe at the Hotel as I smoked and we talked about the show the night before. It was an overcast day with a threat of thunder storms on May 6th of this year, I remember wanting to get moving as three of us were on our Bikes and I felt a little strange in my forehead. Like a sinus kind of rolling pains. Not too bad. I was going to ask for some pain killers from the band like ibuprofen or Tylenol when we got back to the room but as soon as we walked through the door to our room My head started feeling like it would split in half. I lie down on the bed. I couldn’t see out of my right eye. Told Dale. I heard him dialing 911 and Our lead female singer Karma came into the room. after that everything is really spotty as far as Memory goes, I remember the feeling and relief of Morphine from the medical techs and then questions from the surgeon Like, what was my religious preference and would I like a priest or a bishop. I remember him telling me to wake up and listen. He needed an answer. he said there was a Better than even chance I would not make it through this surgery and if he lost me. did I want him to revive me. i told him I didn’t want to die yet but to use his best Judgment. I didn’t want to be a vegetable either. well That was just a little over two months ago and I am Typing this myself so as you can tell if you have had this kind of experience I’m doing very well. I bumped into this thread asking google how long after brain surgery till I can do heavy exercise. I really want to feel normal. I don’t and I have no idea how long it will be or if I ever will. The doctors tell me I wont be able to drive for another three months or so and maybe six. My Day Job is out of the question for another six months or so and probably never the same. No idea how we will make it financially but for now we’re OK because the Salt Lake City Music scene and some good friends in the Auto body Biz held ad charity event for us. that will get us through the year but I need to do something. No idea how long before I can do a show. I did a couple of songs last Friday night with the band. It was enormously fun and satisfying but I am still a long way from leading a show. as for what happened to me. well it seems in my family the men die of this, It was a spontaneous hemorrhage. I knew it but usually they make it longer than I did, 70’s and 80’s ( I’m fifty eight). Might turn out to be very lucky for me. I hope so but there is no guarantee. anyway. I guess I’m doing well. But physically I am not used to this at all. I really have no more than a couple of good hours a day yet. I have been golfing a couple of times. I lift weights and I walk a mile or so a day so far but I am always exhausted and sometimes Light headed. I quit smoking (anything) and drinking alcohol which I’m sure is my Mothers doing (if they have any pull from the other side) ::chuckle:: My Name is Dave. and I thank you all for this venue!

  • Kathleen Murphy

    wow you must be related we sound exactly the same and with the same headache and aggressiveness two peas in a pod lots of hugs and kisses xxx

  • Dave Jenson

    Silent prayer.

    • Dave Jenson

      had surgery 5/6. Mine still breaks open now and then. I didn’t have a tumor. very lucky I guess. was Craniotomy for spontaneous hemorrhage.

    • Wanda F

      Thank you for your response and prayer. Prayer for you also.

  • Anne Baldocchi

    I had 85% of a 5 cm meningioma removed 2 years ago. I guess it started growing many years ago (I’m 63) and the only symptoms were a fairly recent dulling of my senses and I was losing sight in my left eye. I had seizures suddenly one morning 2 days after my eye doctor said I needed a MRI. The surgery was 11 hours, 2 surgeons working in my head which was opened from ear to ear over the top of my skull. After 5 days in the hospital I returned home on steroids, which gave me lots of energy. I quickly planted a vegetable garden and cleaned closets, that’s how much energy the steroids gave me. I have no memory of post surgical pain thankfully, but when I look at the photos a friend took of me at that time I’m horrified. For weeks I wouldn’t go out in public because I was afraid I’d scare children with how bad I looked. Hair started to fall out, but I got better control over that with Nioxin, which I still use. A year after surgery I had 29 pinpoint radiation sessions to keep the rest of the tumor which is wrapped around my left optic nerve from growing. I consider myself very lucky and only have to live with sight lost in the left eye and balance problems. I can’t tell if my short-term memory loss is due to the tumor or just old age. I remember phone numbers and addresses from my childhood, but can’t remember names of people I’ve just met! I think I got off pretty easy with this health problem. My knee replacements in the last 2 years have been a whole lot worse.

    The health insurance was a nightmare. They didn’t want to cover the surgery and I had to hire a lawyer to get them to pay. This happened shortly after Obama said we wouldn’t lose our health insurance. We lost our insurance 2 weeks after that speech, couldn’t get doctors’ appointments for weeks or months, and then the new insurance refused to pay for the removal of the tumor. The bill ran close to $400,000. The ambulance to the hospital alone was $12,000. Thankfully the lawyer got it all settled but that cost us $5,000.

    Thank you for your 20 points. They really helped me get through a tough time. Yes, the points should be attached to the discharge instruction sheet before leaving the hospital.

    I’m living life again with gusto, pure joy, and good friends.

  • Tammy Roberts

    I want to say Thank You.
    I discovered this post and printed for my mom. She was just diagnosed with a tumor and is facing surgery.
    Anyway, I printed this for her, and she made me promise that I would thank the person that wrote it.
    Thank you for giving you a light in this confusing and dark time.
    From the entire Family and all the friends of my mom, Margaret.

    Thank you.

  • Kellie

    I’m one week post op craniotomy. A mass was removed. Waiting for patho report. I was trying to explain to a friend how the simple, every day tasks overwhelm my brain/thinking and I must immediately sleep to recover. With a broken arm, or leg, you can still think without taxing your brain. Just venturing outside for the first time post-op was overwhelming to me because too much input: crickets, birds, pedestrians, traffic, noise, sunlight. Even just riding home from the hospital was too much to handle.

  • Misha

    I had a craniotomy to fix an unusually shaped & sized aneurysm. I’m three months out from the surgery, and thought I’d be better by now, but nope! Your “20 Things…” blog/letter is super funny and right on! Even, similarly, the language thing…I found myself trying to explain to my father that I’d been translating everything from English into Spanish then BACK to English again to figure out WHAT he’s saying (Spanish waS my first language, now I mostly speak English). Can’t read for long just yet; itching is driving me bananas — DONT SCRATCH, doing so will cause wicked pain after an hour or two (thanks for the “gentle pressure” tip!). The toughest part for me is calling people the wrong name (including my AMAZING husband). I know who they are, but, especially when I’m tired, I retrieve the wrong words from my brain.

    Ok, I have to stop, I’m correcting too many of my words I’m writing. Thank you, thank you, thank you for sharing your blog/letter!!!

  • Joanne Perkins

    This is so true!! It took me a long time to work out that I was recovering normally and everyone feels like this. The hardest thing for me was the hurtful people I used to call friends, that dismissed my ordeal and then turned totally against me. It took for a neuro nurse to tell me that some people react like this because they can’t handle the sudden serious nature of what’s happening to you. It’s a reflection on their shallowness rather than me, but is still hurtful. I wish I’d had all this advice sooner. I think it’s so important to have support. I relied so heavily on my husband for the first 6 months after. I wouldn’t have got through it without him, he’s my absolute rock. He even put work on hold for 6 months to devote himself to me and our kids.

  • Chris Hoopengarner

    I myself went through a 32 hour craniotomy in my hometown about 3 years ago. I was only 23 years old. The best thing was my family and friends. The one thing I hated was my level of confusion I was tossed into while in recovery. My neurologist , who was also my surgeon is surprised that I only took 6 weeks to completely recover. They placed my skull back in with some specialized cement.

    My only problem I hate is people stare at me because I look I was dropped on my head. I’ve learned to ignore it.

    The things I like the most from my recovery. I’m more sociable. I have a much faster thought process and Hella quick reflexes. I’ve been playing basketball with my friends and they can’t believe how quickly I react. My vision has improved in both eyes . The nerves in my forehead are super sensitive. I can tell when an object is near my head and I didn’t even notice it before. Even when an object is coming toward me like say a basketball. I move out of the way of the incoming ball and I still feel the pain I would feel if I would have been hit , even though I wasn’t hit.

    • Chris Hoopengarner

      Midway through my surgery i had a large blood clot form and they went to inform my family that I may end beimg comatosed. I underwent 8 blood transfusions , and they even had to remove a decent portion of dead brain tissue.

  • Christina Hitch

    Had brain surgery almost a month ago. I’ve read and release this post every week since. You’ve helped me in ways you can’t imagine. Thank you.

  • Amy Black

    I needed to read this. Thank you!!! I have a 6mm subependymoma in the lateral ventricle. Well, 6mm as of 2015. I’m going to get an mri done again soon to see if it’s grown. I’m having new symptoms that match up to it. So I’m possibly facing brain surgery. From everything I read, it’s more of a “simple” surgery, though still freaking brain surgery!

    I have a lot of faith in my God. But I also needed a dose of reality. I enjoyed your post and am saving it for later.

  • Rakesh Ragnarøkkr

    On April 5 2017 I had Bi-Lateral Burrhole Surgery for a Chronic subdural hematoma of an unknown diagnosis. Then just 20 days later, my head CT Scan showed up with another bleed to my left sided burrhole area. Damn! So another surgery to remove the clot in the same month of Apr 2017. Recovery wasn’t good till June 2017. A further incidental finding on an MRI scan in July 2017 revealed that I have an Arterial Venous Malformation at my left Pterygopalatine Fossa deep within my skull area and a 2mm Aneurysm right behind my left eye. A Fossa biopsy was taken by an ENT Specialist and for that I bled heavily for 2 hours. Was a matter of life and death for me, and perhaps it was the cause of the initial chronic head bleed I had. However, no doctors can say about my initial bleed and they blame me for being alcoholic when I am not. Follow ups by Neuroscience Specs, Psychologists, Psychiatrists and ENT Specialists are almost every week. I have been admitted into 6 hospitals in Singapore for all kinds of crazy things that I feel all over my face and head. Take it slow. I am happy to be alive, being a father to three kids.

  • Fash

    I had a meningioma (same location as acoustic neuroma) removed June 12 of this year. Although I love my surgeons, they did not adequately prepare me for what I can only describe as recovery hell. The discharge papers say you’ll be back to work in 6-8 weeks. That’s laughable — at least for me. I’m five months out and just considering returning to work in December. Most days I woke up wishing I had died in surgery — only recently am I semi-grateful to have survived surgery. My head felt completely disconnected from my body — it felt like I had jello head. My short term memory… what did I just write? Headaches, facial numbness along with a burning sensation and a feeling like me skin on the left side was being pulled off of my face. Chewing — okay so since i cant feel the left side of my face yet, i can’t feel my teeth so chewing is so much fun! Kidding…. Plus it’s painful. It hurts my jaw — so apple sauce is my new best friend. Vestibular physical therapy has helped with my balance so I would highly suggest PT if your insurance covers it. I also lost my hearing in my left ear. This is my experience — so it may not be yours. One thing I cannot stress enough is — be patient with the process. It’s not a normal recovery. It is a rollercoaster. An emotional, physical and mental rollercoaster. I don’t want to scare anyone but this is what I want through and am still going through although much of it is getting better. I keep being told by my surgeons they expect me to make a complete recovery — besides my hearing loss — so I have to trust them. They said the process could take up to 1 – 2 years.

  • Stephanie

    Thank you so much for posting about your experience! I had a craniotomy to remove a meningioma a couple weeks ago. When I found out I’d be having brain surgery, I was of course freaked out and I searched the webs to find firsthand accounts because the medical information was just too general. I got linked to your blog when, in a fit of desperation, I searched for “special abilities after brain surgery.” (It was about your increased sense of smell.) I absolutely love the humor you have shown throughout the process! I had to laugh when I read about your advice to have a post-op quotation ready to go — I had already selected mine (Han Solo, after getting tortured by the Empire). My experience with craniotomy has been quite different, but that’s the value of having firsthand accounts: We can see the range of possibilities. To that end and inspired by you, I’ve started my own blog about my experience: https://mypetheadrock.blogspot.com/ Hope you’re continuing to do well!

  • Tara Jane Lothian

    Omg i wish i had read this before my surgery! Its a great “heads” up for people

  • Debbie Kelly

    The things they don’t tell you before brain surgery are unbelievable! It’s been 3 years since I had 3 aneurysms clipped through a craniotomy. I still can’t sleep during the night hours due to racing thoughts. Wondering what can be done about? You feel differently. Than others already and it’s discouraging when everyone is asleep and am up all night. Can’t sleep more than 2-3 hours at a time anyway! Dr. Prescribed ambien today for sleep but thoughts still racing and of course can’t sleep. Now what??

  • Aveleen Schinkel

    I realize I’m posting this years after you wrote it. Doesn’t matter. So relevant. I wish I read this before my surgery! I could not stop laughing at your list. Hilarious, and every single one was so true. Thank you so much for writing this!

  • Zeeyeol

    Thanx 4 d info. I had a brain tumor surgery last yr in Dec n it still hurts like crazy. But one thing I cannot understand is that everyone who had a brain surgery had general anesthesia but I had local anesthesia. I was awake for more than 3 hrs n eventho it hurt like crazy d surgeons didn’t put me to sleep…

  • VAMomof2

    There are some amazing posts here! Thanks to everyone for sharing.
    My husband had a 2.5cm Papillary Craniopharyngioma bebulked in 2016, followed by radiation.
    We had an absolutely astounding experience; LOVED our neurosurgeon.
    I read the posts to figure out WHO handles your care after the neurosurgery is complete, though. WILL ANYONE LET ME KNOW HOW THAT WORKS??? My husband had personality changes for about a year after surgery & we had no therapist in which to lean on. My neurosurgeon was my only salvation. We are still having significant memory loss and marked fatigue — to the point of my husband’s bosses losing confidence in his abilities so they are cc’ing another employee (a guy who is supposed to be under my husband).
    Getting past surgery was pretty easy. Getting into the same groove of LIFE has remained difficult & I’m starting to resent the neurosurgeon — even though I know in my heart he is a remarkable man and talented surgeon. I just feel that we were so ill prepared for the realities of life after surgery AND I feel like we should have someone to turn to. Before surgery, everything was handled by the neurosurgeon. Who handles life after?

    • Karen

      For me, all I know is that it is my brain surgeon. So I guess you are doing the right thing. Unfortunately, it seems as if aftermath is different for everyone. How is your husband doing now?

  • John DeLong

    I had brain surgery for a massive Subdural hematoma on 03/01/17 extending from the front of my right eye to the back of my right ear. After being admitted to the hospital and operated on within 5 hours I was in then in ICU. The neurosurgeon ordered another CT scan and it revealed massive bleeding now on the left side. Back to surgery, 6 hours in total for a bilateral surgery. I’m 10 months into recovery and I still cannot believe what happened to me, I think about it every day. My issue was spontaneous bleeds with no explanations.

    • Stephanie Hawley

      Hi John! So how are you feeling today? Any crazy side effects?

  • Glen Trigg

    I have had many brain urgeries (approximately 11-13 though I can’t be 100% accurate because I don’t remember the surgeries at and around 2 years old). The conditions that I’ve lived with over the years aren’t what’s listed here mostly. Double vision has been with me ever since my first surgery. My reflux and muscle spasms (shivers) have been with me since a bad surgery in 96. Memory isn’t something that I rely on too often though it does work from time to time (I have had moments when I can’t remember 5 minutes ago or rarely can’t remember someone’s name that I’ve known for years). I’ve even had some moments where I would just fall asleep though I don’t have sleepapnia or narcolepsy. I’ve been tested. If there’s anything else wrong with me, I don’t remember (a little haha as I feel that it’s a better way of handling the situation rather than pitiful, angry, or distant). As I’m sure that you’ve found out, everybody has different reactions to brain surgery.
    There’s no absolute outcomes or predilections with this surgery. Some have 1 and are fine but not everyone is that blessed.

  • Karen

    I read your post right before my brain surgery (a big meningioma) because I was so curious as to what to expect. I want to thank you for taking the time to write all of that because, although there are lots of medical sites that talk about aftermath, it helps to hear it from the point of view of a patient.

    I vowed to take the time to share my experience as well – so here it is. A 52-year-old female with a 4.7cm meningioma behind my right ear. It was pushing my brain over the midline and my brain was herniating into my spinal cord (which started causing real pain, which is what led me to an MRI and diagnosis). I’d been feeling pressure at the base of my skull for about three years and thought it was neck tension from working on my computer all day. (That and being 52!)

    In the end, I believe that I got really lucky. I had no neurological effects. They didn’t shave my head, but did “hair salvage” instead so that my hair covers my scar. I think that it helped to make me feel like less of a patient, once all was said and done. The most difficult part for me was that, because of where they had to cut, I had a lot of neck muscle spasms following surgery, and they were painful in the beginning.

    But I returned work part-time about a month after surgery and started “all normal activities” including running and cardio classes six weeks after surgery.

    They had to leave about 10% of the tumor in because it was involved with a vein but then did radiosurgery several months later to sterilize the remaining tumor tissue. After a craniotomy, the radiosurgery was a complete cakewalk. I went for a run the following day.

    My diagnosis and surgery were about 7 months ago. I took it very easy for about two months. Did a lot of laying down but also made sure to walk every day. And now, each month, I feel better and better. Better than I have for years. I have more energy and just generally feel stronger and more resilient than I have in years. The nerves haven’t completely reconnected in the surgical area but that ain’t no big thing, all things considered.

  • Carla Rodriguez

    THANK YOU so much for this post!! Reading it now has made me super emotional. The points are straight on. It is so helpful and relieving to know that there are others out there going through the recovery process along with me and are having the same pains and symptoms. I thought something was wrong with me that I am still feeling pains a little over a year after my brain surgery . I had a meninigioma over my right eyebrow and when they began surgery they noticed they would have to cut more of my skull than originally planned so now I have a huge titanium mesh plate from my right temple all across my forehead . I have gone through everything you mentioned and still recovering (it is still painful to lay the side of my head on a pillow) . The Drs really do not prepare you for what is to come after surgery . And what will be “normal” pains. From that first frightening look in the mirror, the pain of pressure just bending over and nerve loss /regrowth . I was told 6 months to a year I would be back to Normal lol. THANK YOU AGAIN!

  • Ogagabillions Toosweet Onowigh

    Thanks for sharing

  • trik sina

    Does cold weather makes your head hurt? I had craniectomy last 2014 because of arachnoid cyst.
    I don’t know if it’s just me, cause everytime it’s cold, my head feels like someone is putting pressure on it.

    • Alexis Tran

      Mine does, and then I also get light headed in the sun or when it’s hot.

  • Bernice Wilson

    Two months after subdermal hematoma surgery I am still looking for information what to expect but this is all I could find. Grateful for even this bit. What is the big secret that there is little info of what you can expect. I am still recovering some days I am ok then the next day feel like crap. I am a senior lady and happy to be still here but come on what should I do to help myself. My Dr said it will take time like 3-6 months! I do as much as I am able cooking, cleaning, some days I only want to sit and do nothing. I hate the tightness and pinching in my scull. I massage my scalp as often as I can it helps a bit. The dizzy spells are awful if I have to bend down I get dizzy. Tired is how I feel most times but try to push through. No one really understands how I feel and think after 2 months I should be out partying.

  • Beth Hager

    I had 3rd nerve palsey. Vision related anyersm .. Dr Wong at Hopkins and Dr Henderson from Wimer eye saved my life and vision. They found a 2nd anuersm on the other side of my brain they removed 3 months later. What your mom has going on seems severe. I recently have been having isses short term memory and repeating things alot. This is really scary. And was upsetting my husband. I have made an appointment with a memory clinic. This is per my neurosurgeons advice. Only problem it takes six months to get an appointment. Not sure that humoring your mom is the best thing. But being kind is. It is very hard because I personally know I can be annoying. Best of luck. I hope your mom Improves.

  • Happy Hazel

    Many many thanks for this info, I’m out of hospital a week after emergency brain surgery of which I have no memories of before or after due to PTA apparently Finding myself completely whacked at night having tried my best to ‘be myself ‘ around all my visitors and being grateful I’m here. Beginning to finally get my head (excuse the pun) around what happened and somewhat overwhelmed by it but expect that’s me getting me back to me, despite my balls swelled head. Times are tough but as you said, enjoy being alive, my family were given 5% hope. I’m walking, writing and talking (prob a heap of babble) so a bitta head throbbing and tiredness are minor.
    Good to know I’m not alone (only 32 and was surrounded by older ppl in neurology ward who god love them couldn’t gather the motivation you move forwards).
    wish you all the very best – families and survivors. It may be a long path but thank God it’s a path we all have been given the opportunity to travel thanks to health care professionals. May we all keep our chins up, combat the humps sand look forward to a years time (strongly recommend you start discussing taking a holiday with your strongest supporters now……… something positive you discuss and look forward to.

    Take care of each other,

  • Happy Hazel

    How is your mum doing now? hopefully things have improved. Be sure you link in with national groups which are largely based for both survivor and supporters. Wishing you all the best, as a recent survivor I expect i babble a lot as well but coming around. on a diff note-2 days sounds bizarre, I was 3 weeks and let out early at that due to my request! keep in touch with the specialist ‘re her amnesia – Post Traumatic Amnesia is a standard symptom apparenrly!
    best wishes,

  • john martin

    My wife has a 7.7 cm x 2.5 mengioma we are conflicted on choosing a Doctor and Hospital. On one side is Cedar Sinai and a very good neurosurgeon on the other is Northridge community hospital and a very good neurosurgeon. I know it seems obvious but my wife really likes the Doctor at Northridge. Any advice is appreciated

  • lloyd makanza

    I am due for surgery in two weeks time. I think and somewhat feel mentally prepared for it. I just want to get over and done with the surgery part of my journey so that I can begin my “new life”. Somehow I feel like this will mark the demarcation between the old and new me. The 20 pointer advice kind of puts in line with what to expect. I will definitely share this with my wife, family and friends. I really like the tone of the whole write up, very hilarious but delivering a serious message.

  • Jerilynn Kendrick

    Wish I had seen this blog seven years ago. This should be a “must read” for anyone undergoing brain surgery. It’s been almost seven years since the removal of my meningioma and the left side of my forehead still doesn’t move quite right. So much for arching my left eyebrow!

  • LuAnne Heinen

    I stumbled across this site trying to find out why, 9 months after my craniotomy, I am still extremely tired and suffer from near constant headaches and an inability to remember some things from day to day. All of this is so comforting to read, because I start worrying about all of this stuff and that makes it worse. Since my brain surgery in August of 2017, I have met or heard of 17 people who have had to have brain surgery–I was extremely blessed in that I did not have cancer–but several of the 17 people have, including a 7 year-old boy who I saw in the grocery store who saw my bald patch and scar and asked if I had cancer, too…broke my heart. I never understood survivor guilt until this…sometimes, that is overwhelming. I know that the surgery has changed me–mostly for the better–but I have become extremely irritable with people. They told my daughter that my filters will not be working for a while, and that my short-term memory would be affected and I may not recover it all. At my last check up, I was told that this may all last for around 2 years and that however I am after that time is how I will be. Anyway, thanks to everyone who shared on here–it really does help to know I’m not alone. God bless all of you!

  • Crystal Merical Pepper

    Thank you so much for posting this because it has shed light on things I was confused over when my ex-husband had his surgery. Especially, the hat tip. That has been the most useful piece of information I have received. I agree with some other comments that suggest your post should be attached to every discharge packet. Thank you

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