Any experience of brain surgery?

[LackingBrainPower]

Anyone have experience of brain surgery? Its resective temporal lobe poss bilateral. It’s not for a tumour. I’ve been given info by hosp anout prehab and recovery etc, they say three months for physical and maybe six for ( I can’t remember the word! Not intellegance but brain power IYSWIM) .ive read online and forums but I know mumsnertters will tell it like it is, which is what I want. I know every case is different,but also would like to know if anyone has had it or knows anyone, how long did their spouse or partner etc have to take off work afterwards?would it be better to have carers? I love my DH and want him to be my DH not a carer, he’s already doing far too much but that’s a different thread! Excuse me if I don’t reply to replies, I will have gone for a close up look at the floor

Just bumping this up for you, as I know how hard it is to find information on brain surgery, recovery and aftercare.

It was a totally different thing, but DH sustained a brain bleed last December. He was assessed for surgery twice at end of year, and then again early this year. We couldn't really get any answers, just each time it was risky/might cause more damage (if there's a bleed it can make it worse if they don't get it right) and could possibly reverse itself v how much he could cope with the pain and symptoms in meantime. Each time it was totally his decision and he'd have done to specialist hospital for immediate operation, and I just couldn't find anything to help or that related to us. Luckily for him, he's made a complete recovery naturally - he was given the OK to drive four months later. If they'd operated, six months recovery was mentioned.

I know your circumstances are different, but do take any help your other half can give. He loves you, and just wants you in a better place - and if that means helping a bit more/being patient/change of lifestyle for a few months, he'll do it. At DH's worst, he could shower, but just couldn't cope with thinking about what he wanted to watch on tv, how to cook a meal - he tried to get our finances in place for worst case scenario, but would just sit and look at the computor. I'd have done anything to help/make things easier for him.

Thank you so much @ifonly4. I’m so glad he has recovered it must have been terrifying especially it if came out of the blue. My situation has been a while coming which is why I a, concerned for my DH.i will also be at specialist hospital so am hoping the break after the op is done will actually be good for DH! Definitively not a daily drive ans he will be working. It will be a break for him at home as I am terrifying to live with, not deliberately of course!

Hopeful bump

@LackingBrainPower , my dad had brain surgery for a tumour. He was well in his eighties at the time. His mental capabilities were unaffected but he had to learn to walk again that took a few months.
Im not sure how helpful that is to you but I didn’t want to just scroll by. I’m so sorry you’re facing this, I hope it all goes well for you.

Not the same as your situation but DH had emergency surgery for two bleeds on the brain. Fortunately he fully recovered and pretty quickly but he was not allowed to drive for six months. Wishing you all the best.

Obviously DH was in a different situation, but our local hospital and specialist hospital (not sure where you're going, but we were south west) were great, communicating with eachother, and when needed not rushing time with us. When it comes to it, I hope it goes well.

My daughter had massive brain surgery for a tumour when she was a toddler. If I'm honest who recovery was very challenging as she had pretty much every complication (aside from stroke). She was in hospital for nearly two months, had to learn to walk again, and recovery has been in years, not months. It's hard to know what surgery related, what is complication related and what is the remaining tumour related though.

However there were others with similar surgery on the ward who walked out after a week. And everything in between.

Talking to others who've had kids with similar surgeries there is a huge variation. Every brain surgery is different, not just because of different bits of brain being affected, but because everyone's recovery is different.

I think it's important thing to remember is that brain surgery is effectively a traumatic brain injury, and that needs to heal as well as the physical surgery. It means that as well as usual tiredness from surgery a person's brain is working overtime to compensate for the injury and that can be exhausting. To expect a lot of fatigue. Also expect the weird or the unexpected. Brains are really complicated. Like my child has no sensation of hunger. The relevant area of her the brain wasn't damaged but here we are!

Best of luck. He'll need a lot of support and love, and he's lucky to have you by his side.

I had brain surgery years ago so a lot of things will have changed in techniques and maybe recommendations Also not for a tumour. Even then the surgeon just said every case was so different. It is scary no way round that, but no-one operates, particularly on the brain without a very good reason.

I can’t say about length of time for anyone needing time off work as a carer. However I know I should have taken it slower and it might have been better for my mental health. May have happened anyway though, I had some symptoms in the first days, and it was looking forward to doing things that helped me heal. It may be frustrating wanting to do more but follow advice.

Good luck.

Thanks to all who took time to reply ans hope things are better for everyone who suffered whether theyre patient or relative.

my op has been delayed. I can’t even come close to describing what it feels and I feel awful for my family. It’s terrible. I’m so fucking beyond fed up. All the weeks waiting and worrying and then cancelled at very last minute. So more waiting and worrying. I’m not sure i can cope and I’m worried about dh.

Sorry delayed by weeks I mean. I can’t even think anout DHs work and the problems it will cause, but he HAS to think ans deal with it as long with everything else,this is so fucking shit.
.

That's not good OP - so frustrating.
I have had two brain surgeries. One emergency to deal with a burst aneurysm and the second planned to shore up the emergency fix. Both through my wrist under GA. The second I was out the following day and back at work in a day (self employed desk job). The first I stayed in intensive care for a week with a further week in a standard ward and took three months off work. Very fortunately other than some minor stroke damage from the original incident I have recovered fully.
From what I can tell it was the initial brain injury that impacted me rather than the surgery and being stuck in bed for two weeks is pretty debilitating as well. I was groggy for a couple of weeks after returning home but was capable of looking after myself. I got a few things to help like a shower chair and grab handles and just had to take things slowly. DH took over with cooking etc and I wasn't able to drive which was a pain.

I had a brain surgery 5 years ago. Like others have said, my biggest worry at the time was not being able to drive for 6 months (I travel for work a lot).

I was off work for 6 months, and looking back it should have been longer. The trouble was that my brain didn't understand it needed to heal, and I honestly thought I was fine and pushed myself too hard too soon (much to my family's worry). It takes time for signals to reroute etc and there's nothing you can do to make it happen faster.

I slept huge amounts, and I remember very little about those 6 months. I have vague memories of some hospital visits (I got re-admitted after 3 months with a horribly infected wound, where they had to cut out a load of infected tissue - thankfully not infected bone, which they were worried about).

So expect to sleep for 18 hours a day, especially in the beginning. But it gets easier, and I'm fine now.

Oh - and the texture of my hair all around the vast amount of scar tissue changed permanently, which is odd...

Good luck!

That's awful, OP. I can't immediate how you feel.

Thank you all for taking the time, some awful experiences here so I am grateful for your sharing it and glad people have recovered.

I’ve lost hair and driving licence already, I have a syndrome which is rare so outing even more than a DH hobby! , so I’ve come to terms with hair and do already. My worriest worry (sounds wrong!)atm is I feel so bad for DH as me going to hosp - once the op is done obvs, would have been a break for him and he would be sure I was being cared for safely. I think he is def st the point where he needs a break from caring and worrying so hopefully it won’t be too long too wait and treatment til op is okay as poss. I worry mt DC also have their worry delayed, I hate the thought of causing them stress even tho adults and - they’d use the words like they have a chilled vibe, or something! They’re not tho practically caring for me the way DH is either (good thing obvs).

just got to wait and get through it!thank you all x

ps I used to hang out in pedants corner, ironically can’t remember now where apostrophe in pedants goes! How the world can change so massively and so quickly! I am sure there are spag errors in my post despite it took me so long to type and reading it twice, I just don’t recognise them. It’s really strange. Autocorrect is good sometimes but shit sometimes!

So sorry about the delay, it’s crap. I was fortunate I didn’t have it on my main surgery but I think I had 4 operations a few months apart and onr of them was put off and it was hard. I’d already had one so wasn’t scared of the unknown but you still key yourself up, relatives had made arrangements at work.

OP now and for future your DH could see about help from Carers UK. A place he can talk to others in the same boat. They have lots about rights for carers.

I don’t know what type of care your DH is or will provide but he may be eligible for a carer assessment. I don’t necessarily mean for financial support but if he will be moving you in the weeks after the surgery then there may be help on safe handling. Before you leave hospital if you haven’t already gave an assessment of new things you may need at home such as rails.
https://www.carersuk.org/help-and-advice/practical-support/carers-assessment/

DP had a benign tumour removed a few years ago from the front of his brain. Took 6 months off work, should’ve taken a bit longer but couldn’t afford it. Because of where it was, lots of blood drained to his face and he was on steroids so didn’t look very pretty for a few weeks and had a scar from ear to ear. He got an infection so that put back recovery time and the scar is pretty bad from all the messing around, but his hair covers it. I think they’re as mindful as they can be with where they make the incision and they didn’t shave too much of his hair off. Cognitively he was tip top from the moment he woke up, thank God, and was pretty mobile, able to look after himself, and out of hospital within a few days, though he was tired and had to nap in the daytime. Also, his sense of taste went funny for a couple of months, so he stopped eating, which took care of the weight gain from the steroids. Couldn’t drive for ages, has to take anti seizure medication. So, all in all, it was a bit of a journey, but he fully recovered. I’m amazed at how they could open his head up and mess around with it and leave him as unimpaired as he was. Fingers crossed for you OP, as you say, it’s a very individual thing, but I’m just so amazed at the skill those surgeons have.

thank you for replies. It is really amazing how they can do this stuff for people. I have had so much preoperation scans and tests and the tech is amazing as well as surgeons and all staff involved, their skill.

dh absolutely SHOULD have a carers assessment but I know he does not want to - I can’t find the words sorry! He is the type of man who would say “it’s about you not me” or want me to worry about him. I am hoping the hospital will encourage him as I know I’ll be in there a good few weeks. He’s already had training on how to recovery position and pick me up etc and first aid because seizures are part of my condition. I know my memory and language and some other stuff are affected already. Just in case you couldn’t tell

to those who are the carers of the brain op patients, please, is there anything you have or would have found helpful before during or after hospital stay? Thank you

I think it’s worse as we had a date then it was cancelled, if we had just been waiting for a date I imagine it wouldn’t be so stressful. I just keeping thinking as well as the i would be xxx in hosp by now, I keep thinking DH should have been at work or home by now with relief from looking after me and able to just chill and properly get a break from caring and worry. I know he would still worry about me in hospital but he would know that it’s the most safe place for me. Well brains don’t play ball do they, it’s how it is.

Mine was cancer, I had left temporal lobe tumour removed in Feb 24. DVLA are still b@ggering about with my driving license 🙄. Currently driving under s88 of the road traffic act again. They gave me it back for a year, then asked me to send documents in to renew, I did - IN MARCH and I'm still waiting.

On the positive side, my op was Fri morning. By the lunchtime I was on the phone with my husband, out of hospital on the Sunday, cooked a curry on the Monday, and a full roast dinner on the Tuesday! I had 19 metal connectors removed after 10 days, and the numbness lessened over a few months. It started like a heavy dental injection numbness, I now have feeling back in my tongue, but am still quite numb on the left of my forehead and down to my ear. Most of the incision was in my hairline, so isn't visible.

I think I have a slight memory reduction in older memories. But, I can work, and work out, with no trouble. My eyesight was never affected.

I hope this helps, but if you have any specific questions, feel free to DM me

Not the same but I had brain surgery for a Chiari malformation. The recovery from that was brutal. Be very kind to yourself after. I didn’t feel back to normal for about 4 months post op and even then it was slow going.

Different area of the brain but had surgery for a brain tumour on the brain stem. Had nearly a year off work for recovery. I had to re-learn balance for walking, lost hearing in one ear and had some problems with swallowing and choking in the early months. I did return to a very demanding job but ended up reducing my hours as normal things left me tired. Now many years later I have a neurological condition that affects speech. I get by but hate having to speak to strangers face to face or on the phone. It's a bit of a vicious circle as my tension in those situations makes my speech even more difficult.

As a carer I would have liked more comms from the hospital around the time of his op. It was during Covid so everything was a bit crazy but all comms came from the patient himself, who sent me a perfectly worded messenger message as soon as he woke up, complaining about being hungry. I was extremely relieved but it was a long wait and I wasn’t able to see him much during his various stays in hospital for the infection.

I have little advice, (other than you can never have too many wet wipes post brain sugary) but both myself and DD have been through life altering incidents that where never going to leave no issues, but brain surgery has left both of us with a second chance of life. Hang on in there.

If you or he want/can tolerate it, you're likely to qualify for six weeks free carers help. (It's called re-enablement - but basically it's a bit of help with basic care, but might reduce the load slightly)

Thank you all and sorry other people have suffered. I do have brain issues already so am used to the problems of memory and speech too and how memory affects so so many things! With seizures and physical disabilitys too I am used to asking adjustments for places or peoples. I’m not working at the moment sadly. I Would LOVE to work again but the damage already done cant be undone, we would just like to make less the problems for the future if that makes sense! making the best of a bad situation. Usually it’s a bad situation but that is livable, but the last few days it’s been very hard and I think we are struggling. I’m just so so fucking fed up and I know dh is too. Changed medicine for me is not helping too. I’m so fed up. Sorry this is a moan and prob why dh needs a break too. It’s just one fucking bad thing then another fuckinf bad thing. Sorry about the swearing. I do thank posters to taking time to post and share thank you.

I will sorry meant to say will take the reabling care. Have room about the bed too for space. Fuck it I am going to bed. And hope tomorrow is better!