Hi All, I have come across this group while searching the internet for information to help me understand my concerns since Neurolgy surgery

Since January when I had a craniotomy to remove a cyst my life has changed massively. The aftercare from the hospital has been non existent and my GP is not an expert in offering practical advice on recovery. Not having met anyone who has gone through the stages of recovery I am hoping for some advice. I guess like many that going from having an active life with sporting past times to feeling wiped out from doing nothing much is a downer.

My present situation is that I am back at work part-time and trying to increase my hour's but struggling even on lesser hours. I work shifts and nights which does not help. and my car licence was revoked because of the operation.

What I struggle to understand and deal with is that my recovery is not like a gradual healing process. Some days I feel almost normal and go for walks in the countryside or along the coast which I love. But it never lasts. Within an hour or 2 of getting home I invariably get bad headaches ,sore eyes and feel terrible or if not the following day.

Same with working I can be fine one week but the next really struggle and need a night off or to go home early.

Wonder when it's going to stabilise or how long it takes to not keep burning out with no warning.

Any advice tips appreciated

13 Replies

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  • I feel your pain!

  • I wish there was a formula for it, that I could just give you a fixed number, or date, but there isn't, we all adapt differently, to different extents, and on different time-scales.

    It will get easier, I'm not going to gloss over the fact that there will be dips, as well as periods of relative functionality, but, it will get easier, as you acclimatise to your new 'normal'.

    I over-did everything at first, trying to be what I was 'before', paying lip-service to the fact that I'd suffered a significant brain injury, and trying to prove everyone else wrong when they told me to slow down.

    You're going to have to learn a new pace for a while, you have had brain surgery, it wasn't surgery to remove an in-growing toenail, there's a lot of highly complex repair work going on in there. With hindsight, I was effectively trying to function with the 'flu, it's not practical. I'm not advocating you take to your bed, and wait to get 'better', but, similar to the state your body is in when it's fighting a virus, your brain is still recovering and repairing. (Possibly your skull, too, which will account for some of the headaches, I remember the 'knitting' pain, it was horrible.)

    Please don't kick yourself for not being as able as you were previously, take pleasure in the small things, and the achievements you do make, but accept that brain surgery isn't a quick-fix, they didn't just change a fuse while they were in there, they poked about in your brain, and brains don't like that very much. I can't tell you how best to pace yourself, because I'm not you, I can, however, sympathise with the non-existent after-care, and having to badger the more dismissive of my GPs for a referral to neuro-psychology when I thought I was losing my mind, and they wanted to put me on anti-depressants...

    You're approaching a year in, there are no absolute-defined time-scales, which is what I wanted at roughly 3 months post-surgery, with my initial post on here of "When will I be better?" sort-of-nonsense. This forum has a wealth of knowledge and experience, and we'll probably ALL advise you to contact your local Headway. I'd also ask your employers to refer you to Occupational Health, the employer has a duty of care to ensure you're working as safely as can be, for them, as well as for you.

    The burn-out, welcome to cognitive fatigue, our old friend brain-fog. Your brain has been exposed to air, and light, and tools, and the cyst that was squishing a bit of it has been removed. There may, or may not be scarring of your brain tissue where the cyst was excised. That would constitute an Acquired Brain Injury, the electrical signals that used to flow pretty freely around your brain now have to make detours around the repair-site, you're effectively double-thinking. Sometimes there's an obvious trigger for the fog, the wipe-out, over-exertion, over-stimulus, but brain fog is a bit of a pig, and it can also decide to sit on your head, like a wet sack of potatoes, for no apparent reason, at half past ten on a Tuesday morning. Eat well, sleep when you need to, gentle exercise if you can, your body is the vehicle that transports your brain around, but you do need to treat it well, physical exhaustion is not the same as fatigue, but it can add to the cumulative total.

  • Thanks for taking the time to write, just the sort of reply & advice I was hoping for, when no one you know has any experience of what it's like to be recovering it's nice to hear from some one who does.

  • This forum is excellent for that, and not everyone is as waffly, and long-winded as I can be sometimes. There will be people on here with different advice to give you, having used different adaptation strategies, I can only comment on what I've tried. (Sometimes things I shouldn't have tried, sometimes missing something that should have been blatantly obvious, none of us are perfect.)

    I think that the Headway website has leaflets you can download, and I'd strongly advise only sticking to reputable websites for advice, none of those Facebook "You won't believe this one weird tip!"-type links, if you please.

    We're all different, we all have different adaptations, and limitations, you'll learn how to read the signals that the 'new' you gives you, and you'll find strategies and adaptations that work for you. Above all else, your brain is still healing, it's not a broken arm, where the cast comes off after six weeks, and it's all better, it's a much more involved process. It is daunting at times, and there will be days when it's downright awful, but they always pass.

  • Hi Mazvol and welcome.

    You've had some great advice from Gaia_rising .

    I feel like I keep repeating myself sometimes but going back to a talk at our headway group and the analogy of a fuel tank in a car.

    Before your surgery you had a 50litre tank which would allow you to drive for hundreds of miles but now your tank is a lot smaller so you can only drive for tens of miles.

    Tough. I know.

    If you can manage to do it pacing really helps with the fatigue. Do a little and rest. Do a little more and rest.

    Other top tips are

    Drink plenty of water.

    Avoid caffeine.

    Take high dose Omega supplement.

    Be kind to yourself and relish your achievements.

    Welcome

    Love n hugs

    Xoxo

  • One thing I've learned for myself, three years post brain injury, is to rest as soon as I am aware that I am fatigued and not try to push through it like I always did prior to the brain injury as that no longer works and pushing through actually made things worse. Since the brain injury I found for me I could only work four days a week 4-5 hours a day. Pre brain injury I was a raving workaholic working 10-12 hours per day. Another thing has been accepting that returning to how I used to be is only an exercise in futility and the approach is now more about creating my new normal and embracing that. Living in the present, sometimes taking things an hour at a time. When you have other questions or concerns feel free to post them here. My experience with this group is we are all very helpful and caring. Hope this week goes well for you.

  • Thanks, what you say sounds right to me, I just did a long reply to Becky but I can relate to what you say.I have worked 12 hour shifts for 18 years and gone MTB most days off or been busy doing stuff.

    I am at a loss why the NHS did not better prepare me for the after effects of brain surgery as it's been harder than I imagined.

    My doctor says I have been taking 2 steps forward and 3 back and to rest more but it's not easy

    when it's a nice sunny day and I feel okay I want to be out in the fresh air, for me getting a good camera and learning photography has helped slow me down and take notice of the world around me

    I realise how much I never saw when in the car or on my MTB and I can now identify birds, bugs flowers and sit by the river taking it all in which I never did before.

    Looking at selling my car now as I can't see me getting my licence back until the middle of next year at best.

    Keep looking at ebikes and thinking they might help me go somewhere different but then I feel so tired after work at present makes me unsure.

    Any how thanks for advice

    All the best

    Kevin

  • Hi there. My son had craniotomy last july. Hes 13 now and doing really well considering. He had a bleed which led to the surgery. He was a massive cricketer before the accident. Hes only just getting back into sport. Mainly because of the fatigue. I know we are all different and his story is different but i thought id share his story to see if it helps 😊 We started with small practice sessions and move on bit at a time. If you enjoy it then persevere with it. Brains take so much longer to heal so try not to be too hard x headway people are a great support for adults im told x Travis is very lucky and it sounds like you are too x. School started back with just one lesson a day. Obviously he doesnt have the financial implications an adult does. But he does have all the frustrations. In our 15months of living this way the only thing i can say is you need to be patient and thats not what anyone wants xx i hope you find the help you need xx Take care xx becky x

  • Thanks for that, in one way I think the lack of advice from my surgeon and doctor may have helped. From being aware of my cyst to the operation was only a couple of weeks as it was affecting my vision and after discharge it was 8 months before I saw my surgeon again for advice.

    I gradually built up the distances I could walk over the first few months from a half mile to as much as 8 miles and just accepted it as normal to crash out. with headaches and fatigue for a few days if I did to much . It was and is still frustrating though as apart from an odd time when I start hurting instantly my body happily let's me do things that make me think I am getting better only to punish me within hours with pain that can last days and totally debilitate me from doing anything more than reading or watching TV.

    I went back to work after 5 months on a phased return starting on 6 hours as my normal shifts are 12 hours but in 3 months I only managed 3 continuous 12 hour shift and paid for it with 5 days spent mainly in bed after.

    After a few relapses I am trying to remain steady on 8 hours but as it's night shift it is still harder than I could of imagined.

    In an ideal world I would still be off or working. less but have the usual pressure of being the only wage earner and running costs of a mortgage and family to support.

    My driver's licence was revoked I thought for 6 months from the operation but having done tests and submitted reports to the DVLA I am told their doctor will not even look at my reports until next May due to a 33 week backlog which again forces me to use physical energy up going places on foot which is frustrating.

    I think a positive disposition helps and talking to friends but it's not the same as hearing from people who have been through similar so thanks again for your reply.

    All the best Kevin

  • hi mazfol,

    totally understand what you are saying! I am 8 years down the line now and put all my learning and thoughts into a website that you might find of some use - braininjuryftp.com

    all the best with it

    kind regards

    Neil

  • just had a look at your website and think there will be relevant parts for most people in this group, I certainly found things I could relate to and will go back and read again.Cheers Kevin

  • Welcome Kevin, :) glad you found us.

    I can't add anything to the great advise that everyone has already given, other than to say you're not alone. I'm at much the same stage as u after a TBI acquired in an accident. I would just say remember to praise yourself, look at how far you've come with no proper support. You're on the right track, so have a look at the Headway downloads which are fantastic, and perhaps show them to close family / colleagues to help them better understand what yiure going through :)

  • Hiya

    I think there is little understanding from health professionals about the psychological recovery from brain injury, its difficult to explain it all isn't it, and what they want is to see is the signs of the physical nature i.e cyst is gone etc.

    Sometimes I feel like I am just like an empty shell looking down on what's going on around me as the emotional side of my brain was effected during surgery too, not too much of a bad thing as I don't have the capacity to dwell on things, or get too stressed out about things but not good when I cant show my emotions.

    I think that although I am not the same person I once was, I am more appreciative of the smaller things in life and try to find a little thing each day to enjoy to keep me going, it can be as small as a flower starting to bloom in the garden in Spring.

    Its taken a long time to accept I wont ever be on full steam ahead, like I once was, but just plodding along in life instead. And it hasn't been easy.

    Take care

    Jules

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