20 Things to Expect After Brain Surgery
First published 16th January 2020. Edited Friday 15th July 2022
Leading up to brain surgery, I was desperate to know how long recovery would take and how I would be feeling afterwards. I wanted to know whether I would be able to do certain things again and when it was possible to do so, if I could. I craved reassurance from someone that had been through it and felt that having an idea of what I was about to experience would make it all a little easier.
So I wrote this blog just a few months after my surgery in 2019, with a view to sharing all the details with you, and hopefully providing a little comfort.
Everyone is different and we all have wildly differing experiences. You might experience some of these, or all of these, or others that I didn’t. But one thing we all have in common, after receiving a brain tumour diagnosis, is feeling like you’ve plummeted into a world that no one really seems to know anything about. A little bit of insight from someone that has gone through it will hopefully go a long way.
1.Your senses are going to reset.
I naively didn’t give thought to the fact your senses might be affected whenever the brain is touched or suffers a trauma. But for the longest time I wasn’t able to use my electric toothbrush because it sounded like there was a constant drill to my head and I felt like my teeth were about to fall out. My senses were definitely heightened. I’ve also always been really good with spices – hotter the better – but I ordered quite a mild curry around two months after brain surgery which left my eyes and nose streaming and had me downing pints of milk. Thankfully, this has normalised now and slowly did so after introducing little things over time.
2. Recovery takes time. A long time.
I know this sounds obvious, but I really felt I would be back at work, life resumed, after eight weeks. When eight weeks passed, I realised how crazily quick that timeframe was. Even after three years of recovery, there are some things, like lunges, yoga poses and cycling, that I can’t properly do because of my balance. I used to really beat myself up or compare myself to others when it came to things like writing and walking. But I’ve since learnt to practice patience. Everyone goes at their own pace and life really isn’t a race. The important thing is that you’re patient with yourself and know that healing takes time. Plus, it’s so important that you celebrate those small wins. Carrying a hot drink up the stairs or mastering the escalators are by no means considered amazing for many other people, but they were major accomplishments for me at the time.
3. You will have the attention span of a gnat.
I repeated myself a lot, struggled to concentrate on small things and reading or watching TV was near impossible. My best friend cried when she first saw me. At first, I thought this was just because she was relieved to see me after everything. But only recently did she tell me that whilst it was partly because of that, it was mostly because I asked her about her weekend plans three times in the same sentence. Truthfully, she was scared to death of the changes in my personality. I was totally oblivious of the fact my attention span was so short or that I was incredibly forgetful, and you probably will be too. But expect that this might happen and thank your loved ones in advance for their crazy patience.
4. Nerves take a long time to knit back together and regrow.
I didn’t experience any real nerve response for the first few months, and I was told that nerve damage can take between 6-9 months to heal. But then winter came and even the slightest bit of cool air had the power to send chills down my spine, take my breath away and make me wince more than hearing long nails down a chalkboard. A bobble hat was a godsend for almost one year post-surgery.
5. The surgery itself doesn’t hurt.
The good news is that the brain really doesn’t have any pain receptors and you’re given anaesthetic to numb your scalp.
6. But, the headache does hurt.
The bad news is that whilst your brain might not have any pain receptors, your scalp definitely does. And when the anaesthetic wears off, the headache you experience after your head has been drilled open is brutal and can last for days. But you will be given painkillers, and all sorts of meds. I don’t really know what they give you. I just know it’s a blessing when they do.
7. The drugs will make you delirious.
I mean, I had a great time. I was rapping on the first night after brain surgery, much to the nurses dismay. My heart rate was creeping higher which made the machines beep outrageously, all whilst I should have been “resting.” But you kind of don’t know what you are doing or saying, you will just find it frustrating when others aren’t impressed by your jokes and hilarity and you seem to be the only one laughing.
8. All the meds will probably make you constipated.
Whilst they’re great at numbing the pain, you probably aren’t going to go for at least a week. The doctors will give you (more!) meds for this.
9. Your throat will hurt from the breathing tube. And you will wake up desperate for a drink.
You will be crazy thirsty when you wake up from the operation because of it, but you won’t be given much water in case you throw it up.
10. The catheter will hurt. More so than brain surgery.
That’s probably just a personal opinion. But it was without a doubt the most painful and uncomfortable thing of all. Not seeing? A breeze. Not being able to use a straw, feed myself or talk properly? Fine. And not being able to walk without assistance? I’ll take it. It made everything else seem effortless. At least it was a good temporary distraction from those bigger things.
11. You won’t get any sleep whilst in hospital.
People are noisy, everything beeps, and you have your observations checked every hour, even at night. But the nurses are so patient and doing their best, despite often being burnt out and tired. So even if your sleeping pattern takes a few weeks to normalise again, you’ll be grateful for that time when you had someone constantly on hand.
12. Your scar will become super itchy and tight.
I thought I had got off lightly with this because I made it a few months down the line without any real discomfort. But I guess some would say I’m a late bloomer in that department because when it came, it was a bitch. Whenever it felt tight, I couldn’t move my head, sleep or shower. And then it felt like a vicious circle because my scar didn’t like the cream I was putting on it to loosen it, so I ended up with even more pain and discomfort, antibiotics and was back to not being able to move my head, sleep or shower.
13. You are going to experience frustration like never before.
At things you could do, that you now can’t. At being thirsty and not being able to drink. At knowing what you mean and what you want to say but temporarily forgetting the word or not being understood by others. At not being able to ‘hop’ out the hospital bed or move it higher or lower for comfort. I couldn’t see for a few days and the first stages of facial paralysis made it difficult to talk at all, so it took me the longest time to get the nurses attention for anything. They were amazing when they were there, but when they weren’t I felt like I was constantly shouting for their attention. In the end I’d give up, until the nurses would come over to find me crying and crossly telling them that I had been calling them for the longest time. Not their fault, but the beginning of some severe frustrated moments.
14. Swallow your pride and ask for help.
I rushed back to London after five short weeks of being taken care of post-surgery. It felt like enough time had lapsed and I found the lack of independence frustrating. My family and friends were worried if I would cope alone but I was adamant that I could do everything easily by myself. Admittedly, I did struggle at first just making porridge or doing my own washing. As much as my independent self thought I would have been able to, I soon realised there was absolutely no way I would have managed making myself food, washing my hair or going food shopping in the early days. I’ve never needed my mom more and began learning to ask for help.
15. Expect a constant internal battle with yourself.
Whenever I'd get frustrated, I’d be faced with one of those internal battles with myself and my perspective. Sometimes, I’d think my situation isn’t great; it’s a lot to take on and learn again when everyone else’s lives seem to just be carrying on as normal. Other times, I’d meet someone whose situation was way worse than mine and I’d realise how fortunate I was. This went back and forth for a while, which is one of the reasons I had ‘if you can, you must’ made into a bracelet.
As unideal and frustrating as your situation might be, it is actually okay to acknowledge that, so long as you remember that there is always someone worse off than you and always something to be thankful for. I began focusing on what I could do, and it kind of goes back to those small wins again; it might not be a lot, it may not be what you are used to for a while, but remember that there is someone out there wishing they could do whatever it is that you can.
16. Not everyone will understand you.
I felt so misunderstood all of the time. I was surrounded by people complaining about things that seemed so trivial and small to me because I’d just survived a major surgery, and was now learning how to do simple, everyday things again. That’s ok. The more time that passes, when it isn’t so fresh, this feeling wades and everything slowly falls back to normal. But it’s a great reminder to give you perspective when you do find yourself sweating the small things, or guiltily taking those everyday things for granted.
17. Things begin to fall into two categories.
When I first moved back to London, my room was exactly the same. Of course it would be, it had only been five weeks. But I felt different and like much more time had lapsed than really had. I had a major clear out and spent a day removing items from my life ‘before.’ It suddenly felt like everything now fell into two categories; before brain surgery and after brain surgery.
18. People’s reactions will surprise you.
They will act in such different ways that you won’t be able to predict who will do what. Some will be amazing and will visit you in hospital, send you fresh fruit hampers and flowers, and check in on you constantly. I had messages and cards from people I’d not spoken to for years that just wanted to reach out to send me their love and tell me I could contact them if I needed anything at all.
But then there are others that you will expect to be there that will suddenly drop off the face of the earth or dismiss what you’ve been through completely. There’s no denying that this is confusing and infuriating. But, you begin to realise it’s not really on your radar how others act. You’ll have bigger things to focus on, like recovering and getting stronger. And sometimes, it’s not a bad thing to learn who will actually be there in a crisis. Besides, the relationships and bonds with the people that are there will flourish so much.
19. The entire experience is a bit surreal.
Regardless of the length of time that has passed, I still think it's ludicrous that I had brain surgery. When I look back at photos from being in hospital, it feels surreal. And random. And massively crazy. Like a different lifetime and person. But I'm beginning to realise that feeling never truly goes away for an experience like this.
20. You’ll realise how short life is.
And because of it, you’ll appreciate the small things much more. You’ll eat the cake because you’ll realise life is short. You’ll get emotional when you hear music on the radio realising you haven’t listened to anything in the longest time. You’ll take in stunning scenery, really take it in, and enjoy the fresh air. You’ll put down your phone much more and be more present in the moment. And you’ll start to question your life before, in a good way, and whether it’s actually how you want to be spending this life that you now feel so lucky to have.
One of my favourite quotes is that we all have two lives; the second one starting when we realise we only have one. And this couldn’t feel more apparent after brain surgery.
Whilst it kind of feels like you’ve entered a world you didn’t know existed, and been forced into a club without choice, know that you’re not alone. The others members of this club understand you. ☺
Was walking dog 2/22, dropped, thought I tripped, able to get up, walked home. 💩 my pants. April walking dog dropped, seizure, ambulance picked me up. Don’t remember anything. Found out had 7mm tumor in brain since a baby. Had surgery 8.10 to remove. Came home 3 days later. 3 days later had mild stroke left side. My prominent side. Lost memory. In hospital 30 days for rehab. Came so close to dying. Tubes required to keep me breathing. Woke up days later able to breathe on my own. Had to learn how to walk again, lost memory, didn’t remember anything. All types of rehab for 30 days. Able to go home after 30 days with walker and cane. Now it is 2.23 still having issues. Dizziness, nausea, no appetite, memory slow to return. Cannot go back to work yet. Been walking dog, working out at gym but I’ll feel good a second later not good. I have always been active, never in hospital, high on life. So many times thought of suicide. Having my dog keeps me going. I need to care for her. Seeing a shrink. Running out of $$. I’m 62 with no plan. Sister lives close by & she is my angel. All the doctors said I’d get back to normal life 6-8 weeks. Wrong. My hands/legs shake. I’m sleeping well thanks to melatonin. Hairs falling out due to seizure meds. Getting better at writing everything down however misplacing all the time. Some days better than others. I continue to fall. Scary as do not want to hit head. Sometimes I do, sometimes I don’t. Do not drive as well as I used to. Your posts calm me. Knowing I’m not making this up is calming. Hope to hear from you. All the best.
Hey I have a question as my aunt just had a brain tumour removed a couple of days ago but her face and body have become incredibly swollen and my nana is very worried about it so I wanted to know if that happened to anybody else? hope everyone’s recovery went well :)
Thank you for this very well written piece! I went through surgery in 2021, and am still going through changes. The part where you call your life before brain surgery and after brain surgery is SO true!
I had friends confounded as to why I was so upbeat before and after surgery. I was just so happy to have this thing removed and continue with life! I’d had headaches daily for almost 40 years. The drugs I was on afterwards were beautiful, but sadly I still have headaches.
We are very lucky to live in an age where brain surgery is possible. Yes, entering the unknown is very scary, but a blog like this sure helps ease you through it.
TY soooo much for this post…
Very reassuring 🙏🌸
I had surgery of a glioma blastoma from Ohio State University in 1971 Dr George Bingham and Dr yashon for my surgeons I am now 77 years old and I’ve been told that maybe some Scar Tissue will call seizures and other problems I would like some information on this if anyone has experienced but God has blessed me to live this many years thank you appreciate it