10 Things You Should Do Before Having Brain Surgery

Posted on
Mar 2, 2014


I got an email the other day from someone who was about to have brain surgery. This, in and of itself, isn’t anything new – since writing about my own surgery, I get a couple of emails a week from people who are in similar (or, as is often the case, far scarier) situations. But this last email I received was a little different – the author asked me just one simple question.

Did I have any practical advice for things she should do before her surgery?

I realized that while I had written rather extensively about the emotions that surround brain surgery, and I’d discussed a few of the things I learned from it, I hadn’t really discussed what I did beforehand to prepare for the experience.

And so, since I haven’t been traveling all that much of late, and there is little to report on that front, I thought I’d dedicate a blog post to her question. I want to make it clear – this is just stuff that I felt the need to do. When I’m stressed, when I feel like my life is a little out of control, I get very organized.

I do laundry. I clean house. Sometimes I make cookies, and then arrange them in neat little stacks inside of Tupperware containers, which is a pointless exercise, because I immediately eat all of them. But whatever. Doing this stuff makes me feel better. When life gets crazy, I try to impose order in whatever way I can (and really, what’s crazier than brain surgery?)

So here’s what I did prior to my surgery (or what I wish I had done). Please keep in mind, though, that we’re all different. We all deal with stress in our way, we all recover from illness in our way. Don’t feel obligated to start cleaning your house the night before your surgery or anything. Seriously, no pressure here on anything of this. God knows, you feel enough of that when you are about to have brain surgery, you don’t need me adding on to the pile.

And with that, here’s my brain surgery preparedness guide.

  1. Clean house. I know, I know – this sounds like the last thing you’d want to do before going under the knife, but there was something really relaxing about putting everything away, and knowing that whatever happened, at least Rand wouldn’t be forced to load or unload the dishwasher on top of everything else. Even if you just manage to whittle away a small pile of documents, or sweep the floor, you’ll be glad you did, as it’s one less thing to worry about post-surgery.

    In all of my photos, this is the closest image I could find to “cleaning”.

  2. Pay the bills. I knew that I would be in no shape to handle paperwork or bills afterwards, and this is generally my domain, and not my husband’s. The idea of writing checks or making transfers – or, ugh, explaining to someone else how to do those things – while doped up on morphine was not a promising alternative, so I just took care of it beforehand, which was a big weight off my shoulders.
  3. Wash a load of sheets and towels. This was necessary, and not just me being a clean-freak. I needed to shower with this weird anti-bacterial soap once the night before my surgery, and again the next morning, and use clean towels each time. I also needed to change the sheets on my bed the night before my surgery and again when I got home (all of this was to reduce risk of infection). Plus, I needed to change my pillowcase every couple of nights for a quite a while. In short, I was going through a LOT of linens, so it was nice to have a clean supply of them.
  4. Have someone to look out for you (or check in on you) after you get home. Rand was, pretty understandably, kind of overwhelmed between his work and my surgery.

    This photo is blurry because I took it from my hospital bed, while hepped up on meds.

    Fortunately, my mom was able to come and keep an eye on me – making me food, administering my meds, doing the dishes, and, yes, even helping me take a bath (after a few days, I could shower on my own, but I needed to put a stepping stool in there since I couldn’t stay on my feet for the whole duration of the shower). Which reminds me …

  5. Get a waterproof stool for your shower. Those first few days, I couldn’t stay on my feet for the entire duration of my shower. Having a stool meant I could sit down and finish getting clean (alternatively, I guess you could take a bath, but I’ve always thought baths were kinda icky). I just used a dinky one from IKEA that we had lying around the house.
  6. Drink a ton of water. Actually, this is something I wish I had done. You obviously can’t drink anything after a certain time the night before your surgery (and nothing the morning of), but I should have consumed more water during the day. When I went in for my surgery, I was so dehydrated, the nurse had to massage my vein to get it going for a blood draw (which was not pleasant).
  7. Have plenty of clean pjs and yoga pants. Again, this is another “wish I’d done it” – I quickly went through all my reserves of pjs, and I didn’t have the presence of mind to ask my mom to do some laundry for me, because I just kept falling asleep. Also, note that you will likely be on steroids, which may cause your belly to swell. You’ll probably be a lot more comfortable in oversized clothes with elastic waistbands.
  8. Fill your fridge with healthy snacks. I did not do this. Not even close. I was crazy hungry from the steroids I was on, and wolfed down cupcake after cupcake, which were arriving at my house by the dozens (my friends are amazing). And while that was a heck of a lot of fun, I realize I was going to eat whatever was put in front of me, so I should have made slightly more of an effort to make sure it was at least remotely healthy.
     
  9. Take it easy. Obviously, we were both wicked stressed before my surgery, but Rand and I were also really, absurdly lucky. We both were able to step away from our obligations, and took some time off to relax (or, at least, we tried to). I know it’s not a luxury that everyone has, but if you can take some time for yourself, please do.
  10. Have some fun, damn it. Hopefully, this will be the first and only time you ever have to go through this (and if it isn’t, then let me know, and I will come over to your house and give you lots of hugs and cookies). Make the most of it. Think up clever one liners when people ask how you are doing. Make cracks like, “I need this like I need another hole in my head.” Watch your favorite stupid movie. Find something to laugh about. It will make heading into the operating room that much easier.

    My friend Bob made this for me, because he is wonderful.

Like I said, this is simply stuff that I did to make myself feel better. There’s no right or wrong way to prepare for brain surgery – everyone is different, and needs to figure out what works for them. I just thought I’d share what I had done because, well, someone asked.

Leave a Comment

  • this reminds me of the time i read about you going for your brain surgery and i took a sharp intake of breath and my husband asked me what happened. i told him one of my fav bloggers has a brain tumour. i felt like you are my friend and i know you. how creepy right.

    anyway i just wanted to let you know i am glad everything turned out well and i love the advice you are giving. have a good week.

    • Everywhereist

      <3

      • Laura Chase

        OK, So I hope you guys get this.. I am not great on the computer. I am 58 and was told I have a 2cm MENGIOMA benign they think. I had a seizure while driving thank God I didn’t kill someone! I don’t remember much but I know I was out of it for 30 minutes. I. feel like I have repeated this story 50 times and nobody is Listening!!! I have had all the tests, the first neurologist puts me on Keppra and then sends me for EEGS no seizures while monitored, Is that normal? Of course I wouldn’t have a seizure with the meds.right? Then I go to the Neurosurgeon and he says all of my symptoms are not from the tumor and something else is going on..Here are my symptoms, headaches daily, nausea, ears ringing non stop, extreme fatigue , 3 hour naps no problem, .numbness in my left thigh. ( Tumor is right frontal and on a vein) I repeat myself and my short term memory is bad. My family thinks I should be snapping out of it because all I do is sleep and cry. The Dr’s say lets watch and wait, its slow growing…Well, I feel like crap!!! I can’t drive, and I can’t do my job ( Tax Assessor). Now another Dr. is checking thyroid and adrenal glands. I feel like I am stuck waiting for someone to help me. Just being able to Vent has been great!!! THANKS!

  • I’m so pleased you can talk about this all, and its great that you can help others with your advice.

  • MattJ

    Aargh. Booked in for next Tuesday and terrified. Can’t even collate my expenses before I go off work, never mind sort my house out! How did you cope as it got closer?

    • Everywhereist

      Matt – the closer we got to the date, the more I cleaned (seriously. That’s how I cope with stress!). But honestly, the fact that it wasn’t up to me – that I had to have the surgery, and there was no way out of it, kind of made it easier. I mean, it was inevitable, and there was nothing I could about it, so I just went along for the ride, if that makes any sense.

  • Great advice, thanks! I’m now 5 months post brain surgery myself. Let me add one thing: get some friends to hang with your loved one during and after the surgery. He (in my case she) will need all the support he/she can get, esp. If things don’t go as planned. You are so lucky to have Rand and I had Nicole. Both very strong people, but having other friends around at the critical times that they know and trust is an awesome help to them. After all, you are just laying around-they gotta keep it all together!

  • Alex

    Please please please tell me where that brain mural is located. I must see that in person! And, as usual, very nice post. Like Michelle above, it’s gotten to the point that reading your posts is like meeting daily with a close friend for a chat. Thanks so very much for that. And, Michelle…it’s not creepy.

    • Everywhereist

      I think it’s in the MoMA in NYC, but it might not be on display anymore!

  • I had a different surgery, but as I cleaned (another clean freak over here!)I also cooked a ton of healthy meals for my family. As I recovered it made me feel less helpless knowing they were still eating Mom’s home cooked meals.

  • Now I’m trying to remember all the things I wished I’d done before mine too! The only thing I can think of is “have a comfortable chair handy, because you will be falling asleep all the time and you may not be awake enough to get to a bed.”

  • I feel like I could have used that stool when I had my wisdom teeth out in high school. Turns out, I don’t do so well with strong painkillers.

  • All great advice and equally applicable before any major surgery—-or even childbirth. I think that cleaning thing you went through is akin to the “nesting” surge of cleaning and organizing many women go through before they give birth. You want things to be in order for your loved ones who live in the “nest”. (When I found myself on my hands and knees, 9 months pregnant, scrubbing the kitchen floor the day before my due date, I knew “nesting” was a real thing since that is most definitely not the way I usually clean the kitchen floor).

    As for the shower chair, shower chairs/benches are real things available from medical supply companies. I would think there should have been an “Occupational Therapy” consult before you left the hospital after brain surgery to make sure you would be OK/safe with “activities of daily living”. A shower bench/stool could have/should have been ordered for you by the OT or your physician. (Occupational therapists are basically physical therapists for the top half of the body and the brain).

    You did bravely bring your followers along for your journey to rid yourself of “Steve” and we waited for each installment with bated breath. I hope you get to hit the road again soon.

  • It’s not something I’ve had any personal experience with, but it’s really interesting to read this, some great practical advice.

  • Thanks for all your honesty (and humor) about your surgery. Having read how you handled the whole thing made me remember to add some humor and lightheartedness to my husband’s situation this last summer when he had a huge tumor removed (albeit from his backside, not his brain).

    Also, I strongly second the take some time to relax before surgery advice. We didn’t even realize how important this one was until we looked back on the whole debacle. We had randomly planned a trip to Colombia before we got the news and the dates somehow worked out perfectly for us to take the trip despite the looming surgery date. The trip was good but it wasn’t until we got back and had a few days to be really stressed and miserable before the surgery that we realized that trip was a life saver. If we had been that stressed and miserable for an extra two weeks, it would have been unbearable.

  • Did you get your staples out yet? I see they spared your hair as they did mine. If they’re still installed. when the doctor thinks he’s done removing them all, double check with your hand. Mine were a bit more spread out but the doc missed two (think a dremel’ed door into the left side of your skull)(I had a temporal lobectemy circa 2010) but do a hand check as the feeling from the ones removed seem to take away the awareness for the ones that remain. And if you’re still down in it, good luck.

  • My partner had brain surgery back in December…we got the first inkling that there was a tumor on the 3rd, then it was confirmed on the 10th and she was in surgery on the 20th. It both felt like there was a ton of time waiting around, but at the same time it went very fast.

    Anyway, we did several of these things, so I think your list is great. My favorite joke during the whole ordeal was “well, you were all worried the doctor would say your symptoms were all in your head. Turns out, it WAS all in your head!”

    We also felt relaxing and enjoying some time before was a good strategy…I took time off from work the two days before the surgery and of course the week after. We managed to sneak out on one snowboarding excursion at our favorite ski hill the weekend before since we knew she’d probably be out of commission on that kind of thing for the rest of the winter (which is a bummer because all the ski places near us are having a fabulous snow year!) It was good to get out and was fun, but of course she was dealing with some of the symptoms from the tumor, so it wasn’t ideal.

    One thing that falls in with “pay the bills” is to take care of any other important medical / financial paperwork, just in case. In our case, we already had wills, but we learned we could file a “beneficiary deed” on her house, which would make it easier for me to inherit if something awful happened. We also made sure we had copies of our health care directives and power of attorney documents, and filed them at the hospital so they had copies as well. This might not be as big of a deal for people who can be legally married (since marriage handles some of that automatically), but for us it was critical. We certainly hoped we wouldn’t need those documents, but having them taken care of gave me peace of mind.

    The day of the surgery, all our close friends were there in the waiting room with me at different points during the day. Most of them were there when the surgeon finally came out and told us it was done. That support was HUGE.

    For some reason, she got stuck waiting around in pre-op for hours (from about 7 am till 12:30 or so). We managed to convince the nurses to let more of us back into her cubicle and we played cards, which made the last hour of waiting go much faster and with less pre-surgery anxiety. So I would definitely suggest bringing cards or games like that on the day of to help pass the time a bit.

  • I love that you’re able to laugh, tell jokes, and even create monster faces out of life’s hardships. That’s one of the qualities I admire about you the most.

    Well, that, and your love for cupcakes.

  • Liz

    I love this list!

    I will add to it: get a pedicure and a facial. It’s nice to not have to worry about your toes for a while and have fresh skin.

    When I tried walking after my second brain surgery it was fun looking down at my badass toenails. It’s the little things.

  • Sameera

    That post about your brain surgery- when I read that I completely fell in love with you, your sense of humor and your writing. I am glad to feel like I have you as a friend through your blog. P.s. Don’t tell my husband .. Jk he knows ..I couldn’t resist sharing your posts with him on many occasions.

  • Sandra

    Hi!
    Just stumbled upon your blog while searching for ‘ how to prep for brain surgery’ – so glad I did! I dig your humor – I evicted a ‘Steve’ 16 yrs ago, now someone new has moved in. Guess my head is a cool place to be…
    new eviction date is set for April 10, 2014. Meanwhile, I will read more of your blog – I am definitely not the cleaning type. Thank you for the laughs – badly needed!! And now I also wish I had taken a photo of the poster outside my awesome surgeons’ office (depicting Egyptian dog/wolf? figures taking the brain out of a mummies’ open skull). It was so funny, but there were other patients around and I chickened out. Next time, I’m there… Greetings from Germany 🙂 Sandra

  • Scott

    I am going to have my second surgery next Monday. An additional to-do although not a positive thought …

    Write down every account, username, password and any other thing that you may not remember and will need someone to get into. Imagine an email address that no one can access or an online insurance account that someone needs to spend hours on the phone with someone to gain access to.

    My first time it took me a few weeks to remember these things. Granted, my surgery is in the name and memory area.

  • Yvonne

    I am booked for a Craniotomy on 9/11 and am terrified!
    Something is eating my skull and I can’t ignore it.
    Reading this has helped so much and my Husband has something to go by.

    Thank You!

  • Leigh

    I found your blog right after my initial diagnosis in early April of this year. I had found another blog but there were no entries after the surgery date. : (
    Needless to say, your story was a welcome relief. After a successful surgery in early May to remove a benign Central Neurocytoma, I am feeling like a million bucks. I had three seizures after my surgery. Where I live, you can’t drive for 6 months after a seizure. During all of this, I have found the waiting to be the most difficult part. Waiting for the first meeting with the neurosurgeon, waiting for the surgery, waiting to be able to drive again, waiting to get “back to normal.” I have a friend who is living with a brain tumor, and he has been an incredible resource for me. As soon as I got my diagnosis, he insisted that I stay positive. I told my friends and family that in order to ask me a question about the tumor they had to first tell me a joke. That helped. I also asked my friends to send me the corniest get well cards they could find, preferably those with donkeys on them.
    To those of you that are just starting on this journey, remain hopeful! The brain is an amazing organ and has an incredible capacity to heal itself. “The Brain that Changes Itself” by Normal Doidge is a great book.
    Before the surgery, I also found myself cleaning, cleaning, cleaning. You want everything to be in order, just in case. Unfortunately, I’m still doing it. This is not who I was before this surgery. Also what Scott said is true. Create a spreadsheet/list of usernames and passwords. I have so much trouble with those now even though they’re written down!

    • Amie Burgess

      Hi Leigh,

      i stumbled across this blog and your comment after my diagnosis and treatment for the same type of tumor as yours. I was told at the time a Central Neurocytoma was a very rare type so It is interesting to come across someone who had one.

      I did not have time to process my diagnosis as it was all very rushed and I had to be operated on within a couple of hours. I am also lucky because I was not with it enough to comprehend what was going on and I am lucky I do not remember anything past walking to my first MRI to two days later after two operations.

      At the time I did not know anyone with a brain tumor but I have now been in a situation where I have been able to help someone who does.

      I have heard great stories about the book, The brain that changes itself and it is on my to read list. Another good one is ‘How I fixed my brain’ It is about a psychologist who has a stroke after his stressful career and marriage breakdown. It kept me captivated right until the end and I could relate to many of his stories.

      I think staying positive throughout the ordeal is what kept me going. Once I got over the fact that it happened and began to focus on how I was going to get better I went from strength to strength. After each surgery (6 in total) my recovery got quicker and quicker.

      I do sometimes get paranoid now (as I still have a portion of inoperable tumor left). When I have a headache I ask people how my pupils look (large pupils are a sign something is wrong). Since getting out of hospital in August 2013 I have had no complications other than your typical fatigue and getting back into work etc.

      Overall the 2 month experience in hospital was both a highlight and a bad point in my life. It made me see that I should not take life too seriously, it made me see who my true friends were and it reconnected me with some family members. Mostly though it has taught me not to take the small things for granted ie being able to have a shower by your self or be able to wear your own clothes, not the nasty looking hospital attire or pjs.

      Although I did not have a seizure I was unable to drive for 18 months after my last operation and have just in the last couple of months been able to drive again. In early 2014 it was declared that I had the ‘normal’ cognitive levels etc of someone my age and background but I never imagined I would care so much that I was able to drive again. After getting back into my career and getting my life back on track I finally felt normal again when I was able to get myself from A to B without relying on public transport or other people.

      I was very lucky because the area I lived in nearly lost its neuro ward 3 years prior to my diagnosis. I remember signing the petition to save it thinking I will never need this but it is a good thing to have here. I would never have imagined I would spend two months in that ward after it was successively rescued.

      I loved the blog entitled 70 things I learned from having a brain tumor, the humorous aspect is a great way of lightening up the situation and many things in the list were things I did.

      I’m glad all is good with you now and I hope they continue that way.

  • Cathy DeGroote

    A note for the caretaker: please don’t change the furniture around and please have the house clean when the brain surgery patient comes home. I lost it when I came home to those two situations and started creating order in the home because it makes it easier to think and relax. Brain surgery and hospitalization for three weeks didn’t make sense to me. All I wanted to do was to sleep in my own comfortable bed. Moving furniture is a very bad decision after brain surgery!

    Three and a half years later and “the new normal” you have to blend in to still keeps changing. Always reflect on beng alive and practice being in the here and now. Seizures, no driving for six months and headaches may come and go and pop up at any time, especially when the barometric pressure drops. It is all a small price to be paid for the luxury of being here to enjoy today.

    A note to the caretaker: I wasn’t in your shoes. Years later, after many years of repeating the same questions, I realize the trauma of it all and how the caretaker had to continue to function through it all.

    So, if you are a friend of the family, could you restore order in the home the day the patient is released?

    Patient: be really nice to yourself and others because this is a new journey with no road maps!! (Travel blog humor.)

  • Hi there,
    I just wanted to say, that I enjoyed reading you brain surgery entries (before/after). I’m going through a brain tumor/brain surgery myself at the age of 23. Just wanted to say thanks…. : )

  • Hi there,
    I stumbled across your blog when I was searching for info regarding “life after brain surgery” after my mom’s surgery for brain tumour. I found your list extremely funny and have briefed my mom on the things she can expect from after surgery. She loved it too:) Although it’s really tough sometimes we try to keep it light.
    All the best and good luck with your book!
    Way to go!
    Abby

  • Amanda

    Hi! Just wanted to thank you on sharing your experience! My 10 yr old will be having epileptic brain surgery in 2 weeks and this helped me become aware of what we should expect. Thank you for that! Hope you’re doing great!

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