-

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.”

—————

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.

Full list of categories:  Advice » Nothing to Do With Travel
«
»

Comments (191)

  1. 28. Aug, 2013 / Mike:

    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.

    [Reply]

    ss5321 Reply:

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

    [Reply]

  2. 28. Aug, 2013 / Sha:

    well there you go again … laughter and tears

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

    Sha

    [Reply]

  3. 28. Aug, 2013 / Gary Yeates:

    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.

    [Reply]

    Everywhereist Reply:

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

    [Reply]

    skye Reply:

    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!
    http://onlinelibrary.wiley.com/doi/10.1002/mnfr.200700002/abstract

    [Reply]

  4. 29. Aug, 2013 / 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!

    [Reply]

    Everywhereist Reply:

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

    [Reply]

    ss5321 Reply:

    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!

    [Reply]

    Everywhereist Reply:

    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.

  5. 29. Aug, 2013 / Chuwechuwe:

    wow. Geraldine, you have an amazing gift.

    [Reply]

  6. 29. Aug, 2013 / Michelle:

    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.

    [Reply]

  7. 29. Aug, 2013 / Sara:

    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!! :)

    [Reply]

  8. 29. Aug, 2013 / Bakary:

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

    [Reply]

  9. 29. Aug, 2013 / 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!

    [Reply]

  10. 29. Aug, 2013 / Kelly:

    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!

    [Reply]

    skye Reply:

    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!

    [Reply]

    Willa Reply:

    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!!!

    [Reply]

    debra Reply:

    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

    Karen Smith Reply:

    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

    [Reply]

  11. 29. Aug, 2013 / Suzanne Fluhr (Boomeresque):

    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”.

    [Reply]

  12. 30. Aug, 2013 / U_Kno_Who:

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

    [Reply]

  13. 30. Aug, 2013 / Shayla:

    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!

    [Reply]

  14. 30. Aug, 2013 / 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.

    [Reply]

    Ann Reply:

    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…

    [Reply]

  15. 30. Aug, 2013 / 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!

    [Reply]

  16. 31. Aug, 2013 / 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.

    [Reply]

    Cathy Reply:

    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.

    [Reply]

    Cherie Taylor Reply:

    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!!!

    Cherie

    [Reply]

    Mary Reply:

    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!!

  17. 01. Sep, 2013 / Jules:

    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!

    [Reply]

  18. 10. Sep, 2013 / 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!

    [Reply]

  19. 13. Sep, 2013 / Hagar:

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

    Love from Amsterdam

    [Reply]

  20. 17. Sep, 2013 / Meg:

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

    [Reply]

  21. 17. Sep, 2013 / Joanne Joseph:

    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.

    [Reply]

  22. 17. Sep, 2013 / Charlie:

    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.

    [Reply]

  23. 30. Sep, 2013 / 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 !!!

    [Reply]

    Debbie w Reply:

    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!

    [Reply]

    Eileen Reply:

    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.

    [Reply]

    Mark Reply:

    Eileen,

    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…

    [Reply]

    Eileen Reply:

    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.

    [Reply]

  24. 01. Oct, 2013 / 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.

    [Reply]

  25. 08. Oct, 2013 / 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.

    [Reply]

  26. 09. Oct, 2013 / Marie f:

    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

    [Reply]

  27. 09. Oct, 2013 / 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.

    [Reply]

    jp_soco@yahoo.co.uk Reply:

    Do you have any other side affects?

    [Reply]

  28. 13. Oct, 2013 / Sarah S.:

    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.

    [Reply]

  29. 13. Oct, 2013 / 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.

    [Reply]

  30. 22. Oct, 2013 / Deborah Moone:

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

    [Reply]

    Everywhereist Reply:

    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.

    [Reply]

    Analie Cangco Reply:

    =( 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..

    [Reply]

    hl Reply:

    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.
    hm

    [Reply]

  31. 28. Oct, 2013 / 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.

    [Reply]

  32. 28. Oct, 2013 / minnemom:

    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.

    [Reply]

  33. 30. Oct, 2013 / Lorna:

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

    [Reply]

  34. 30. Oct, 2013 / 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!

    [Reply]

    Everywhereist Reply:

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

    [Reply]

    Analie Cangco Reply:

    =( 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.

    [Reply]

    karen Reply:

    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?

  35. 02. Nov, 2013 / 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.

    [Reply]

  36. 04. Nov, 2013 / 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.

    [Reply]

  37. 05. Nov, 2013 / 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

    [Reply]

  38. 05. Nov, 2013 / jp_soco@yahoo.co.uk:

    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 :)

    [Reply]

    Sheryl Reply:

    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.

    Sheryl

    [Reply]

  39. 06. Nov, 2013 / 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.

    [Reply]

    Everywhereist Reply:

    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.

    [Reply]

    Eileen Reply:

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

    [Reply]

  40. 09. Nov, 2013 / Cassandra:

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

    [Reply]

    Everywhereist Reply:

    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.

    [Reply]

    Terri Reply:

    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.

    [Reply]

    Terri Reply:

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

    [Reply]

  41. 09. Nov, 2013 / 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 .

    [Reply]

  42. 10. Nov, 2013 / Needles:

    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

    [Reply]

    ann Reply:

    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.

    [Reply]

  43. 11. Nov, 2013 / 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.

    [Reply]

  44. 12. Nov, 2013 / 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

    [Reply]

    Karen Smith Reply:

    Prayers

    [Reply]

  45. 14. Nov, 2013 / Natalie:

    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:
    brainsurgeryandrecovery.blogspot.com

    [Reply]

    Everywhereist Reply:

    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. :)

    [Reply]

    Analie Cangco Reply:

    =) 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.

    [Reply]

  46. 19. Nov, 2013 / Kumar Persaud:

    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.

    [Reply]

    Terri Reply:

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

    [Reply]

  47. 25. Nov, 2013 / 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!

    [Reply]

  48. 26. Nov, 2013 / 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.

    [Reply]

  49. 30. Nov, 2013 / 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.

    [Reply]

  50. 04. Dec, 2013 / 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 .

    [Reply]

  51. 05. Dec, 2013 / Analie Cangco:

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

    [Reply]

  52. 05. Dec, 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.

    [Reply]

  53. 07. Dec, 2013 / Tara:

    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.

    [Reply]

  54. 08. Dec, 2013 / 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

    [Reply]

    Everywhereist Reply:

    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!

    [Reply]

    Mark Reply:

    Mary,

    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!

    [Reply]

  55. 09. Dec, 2013 / 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!

    [Reply]

  56. 10. Dec, 2013 / 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.
    Awesome.
    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.

    [Reply]

  57. 10. Dec, 2013 / 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!

    [Reply]

    Callysmom Reply:

    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?

    [Reply]

  58. 13. Dec, 2013 / 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”

    [Reply]

  59. 14. Dec, 2013 / 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.

    [Reply]

  60. 15. Dec, 2013 / 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!

    [Reply]

  61. 16. Dec, 2013 / 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!

    [Reply]

  62. 17. Dec, 2013 / Tarin:

    Thank you :)

    I am scared, this helped.

    [Reply]

  63. 19. Dec, 2013 / 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.

    [Reply]

  64. 19. Dec, 2013 / 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

    [Reply]

  65. 19. Dec, 2013 / 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.

    [Reply]

  66. 19. Dec, 2013 / Helen Clark:

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

    [Reply]

    Everywhereist Reply:

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

    [Reply]

  67. 20. Dec, 2013 / Judy Denis:

    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.

    [Reply]

  68. 20. Dec, 2013 / 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.

    [Reply]

    Analie Cangco Reply:

    =) 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

    [Reply]

    Owlpaca Reply:

    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.

    [Reply]

    Salman Reply:

    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.

    [Reply]

  69. 20. Dec, 2013 / 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.

    [Reply]

  70. 21. Dec, 2013 / Clare:

    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.

    [Reply]

  71. 27. Dec, 2013 / 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 :)

    [Reply]

  72. 29. Dec, 2013 / 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?

    W

    [Reply]

  73. 30. Dec, 2013 / Sarah:

    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

    [Reply]

  74. 01. Jan, 2014 / 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………………………..

    [Reply]

    Nicole Reply:

    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.

    [Reply]

  75. 04. Jan, 2014 / 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

    [Reply]

    Kim Reply:

    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

    [Reply]

  76. 04. Jan, 2014 / 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

    [Reply]

  77. 05. Jan, 2014 / Blas:

    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!!

    [Reply]

    Everywhereist Reply:

    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!

    [Reply]

    Sophie Reply:

    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

    [Reply]

  78. 07. Jan, 2014 / Richard van Buren:

    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

    [Reply]

  79. 09. Jan, 2014 / 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).

    [Reply]

    Eileen Reply:

    Ditto!

    [Reply]

    michelle Reply:

    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,

    [Reply]

  80. 10. Jan, 2014 / 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 !

    [Reply]

  81. 11. Jan, 2014 / 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!!!!!!!

    [Reply]

  82. 12. Jan, 2014 / 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.

    [Reply]

  83. 13. Jan, 2014 / 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.

    [Reply]

  84. 17. Jan, 2014 / 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

    [Reply]

  85. 18. Jan, 2014 / 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.

    [Reply]

  86. 19. Jan, 2014 / 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

    [Reply]

  87. 22. Jan, 2014 / 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

    [Reply]

  88. 22. Jan, 2014 / 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

    [Reply]

    Everywhereist Reply:

    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.

    [Reply]

    Analie Cangco Reply:

    =) 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.

    [Reply]

    Desirae Reply:

    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.

    [Reply]

  89. 23. Jan, 2014 / 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.. .

    [Reply]

  90. 23. Jan, 2014 / Analie Cangco:

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

    [Reply]

  91. 26. Jan, 2014 / 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.

    [Reply]

  92. 27. Jan, 2014 / Barb:

    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!!!!

    [Reply]

  93. 27. Jan, 2014 / 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 .
    thanks

    [Reply]

  94. 28. Jan, 2014 / Suzanne:

    Hi,

    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.

    [Reply]

    Analie Cangco Reply:

    =) 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?

    [Reply]

    Eileen Reply:

    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.

    [Reply]

  95. 29. Jan, 2014 / Kim:

    Hello,
    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

    [Reply]

  96. 06. Feb, 2014 / 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.

    [Reply]

    Anna Reply:

    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.

    [Reply]

    Analie Cangco Reply:

    =) 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!

    [Reply]

  97. 08. Feb, 2014 / 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.

    [Reply]

  98. 08. Feb, 2014 / 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

    [Reply]

    Everywhereist Reply:

    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? :)

    [Reply]

    Owlpaca Reply:

    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

    [Reply]

  99. 11. Feb, 2014 / 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.

    [Reply]

    Analie Cangco Reply:

    =) 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

    [Reply]

    Ac10.8 Reply:

    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.

    [Reply]

  100. 19. Feb, 2014 / 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.

    [Reply]

  101. 21. Feb, 2014 / 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.

    [Reply]

    Owlpaca Reply:

    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!

    [Reply]

  102. 24. Feb, 2014 / 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 …

    [Reply]

    Owlpaca Reply:

    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!

    [Reply]

  103. 24. Feb, 2014 / 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 :(

    [Reply]

    Stuart Palm Reply:

    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.

    [Reply]

  104. 25. Feb, 2014 / 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

    [Reply]

  105. 27. Feb, 2014 / 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.

    Alex

    [Reply]

  106. 01. Mar, 2014 / 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

    [Reply]

  107. 03. Mar, 2014 / 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.

    [Reply]

  108. 04. Mar, 2014 / 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

    [Reply]

  109. 04. Mar, 2014 / 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.

    [Reply]

  110. 06. Mar, 2014 / 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.

    [Reply]

  111. 06. Mar, 2014 / 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

    [Reply]

  112. 11. Mar, 2014 / Stuart Palm:

    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

    [Reply]

    Diana Reply:

    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.

    [Reply]

  113. 12. Mar, 2014 / mattj:

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

    [Reply]

  114. 12. Mar, 2014 / 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.

    [Reply]

  115. 18. Mar, 2014 / Alejandro Ramon:

    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.

    [Reply]

    Eileen Reply:

    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.

    [Reply]

  116. 22. Mar, 2014 / 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.

    [Reply]

  117. 23. Mar, 2014 / 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’.

    [Reply]

  118. 24. Mar, 2014 / 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!!!

    [Reply]

  119. 27. Mar, 2014 / 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!

    [Reply]

  120. 30. Mar, 2014 / Will Corriveau:

    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. :-)

    [Reply]

  121. 03. Apr, 2014 / 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?

    [Reply]

    Everywhereist Reply:

    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.

    [Reply]

    Diana Reply:

    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

    [Reply]

  122. 03. Apr, 2014 / 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.

    [Reply]

  123. 08. Apr, 2014 / 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.

    [Reply]

  124. 12. Apr, 2014 / 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

    [Reply]

Leave a Reply