Asking about peoples experiences post surgery

Hello to everyone,

My 65 year old mother has recently had brain surgery to remove a Cavanoma from her head (on 9th of March), it's now over a week later and I'm all over the place with worry.

She has almost no short term memory and still cannot figure out where she is, yet can remember some things from the past okay. She's becoming increasingly anxious and afraid and all we can do is reassure her it'll be alright (feels like every 5-10 minutes as she forgets).

The doctors initially said 3 days initial recovery, but it's clear we're nowhere near that, so I need help in understanding what's wrong. Will her memory come back? will she ever understand where she is? Is her brain still coming down from swelling?

What experiences have other people had?

I know each brain injury is different, but there must be some fairly typical cases or averages of what to expect. Can anyone please help me?

D

10 Replies

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  • Hello D. It's such a worrying time for you, but really, 5 weeks is no time at all in recovery terms. I had a bleed on the brain in 2011 and talked utter nonsense for the first 3-4 weeks and was very confused for a while afterwards, although I was unaware of everything & everyone at that time.

    Anyone here will tell you that 3 days recovery is unheard of after brain surgery so I'm not sure why the doctors would make such a prediction.

    For many people here, brain injury has been a life-changer and a very slow adjustment to new issues such as short-term memory loss (v. common) and balance problems, to name just two of many.

    There is every reason to be hopeful for better days for your mum, but I'd suggest you think in terms of weeks for immediate improvements and months for a return to something resembling normality.

    It's been over 4 years for me and I can honestly say I'm still seeing progress, especially with memory and mobility.

    Please keep us updated on your mum's progress D. All best wishes to you both.

    Cat xx

  • My dear in my case of brain surgery I got my memory back after a gap of 37 days & full recovery was after a gap of Approximately 4 to 5 months. At present my age is 72+ & the brain surgery was performed when my age was 31+ due to Road Accident. As such don't worry she will be recovered in due course. My best wishes for early recovery.

  • I wasn't sure what a cavernoma was so just looked it up. Am now understanding that your mum will have had an anaesthetic and surgery to remove it from her brain. I guess it will depend on how accessible and where in her brain it was as to the impact of the evasive surgery. Also, as for anyone having an anaesthetic that has an impact on us and can take time to recover from, so could also explain some of the confusion. Wondered if you are aware of the cavernoma.org.uk website where they have some information on the site but also offer other types of support including a helpline phone or email. Maybe it would be helpful to contact them as they would be very knowledgeable about what to expect with recovery time etc.

  • There are no normals or averages in brain injury recovery and no one can predict a full recovery at all. The extremely lucky ones are those that get a "full" recovery.

    You have had good advice here from Cat and Strawberry don't pitch your expectations at a full recovery and then you will not be disappointed if that does not happen.

    Given time and patience and the right support there will be a good recovery I am sure.

    Love Janet X

    I am 4 years down the road, I am 63 now, but I doubt I will ever achieve full recovery .

  • dbizon sorry no help at all on this one as my brain injury was due to a stroke.

    the one piece of advice i will give you and im sure ill have the backing of all on here, is find your nearest headway group go along and besides hearing from both sufferers and people who support them in their dailey lives, youll make life long friends.

    but still visit us on here, all the best

    steve

  • Thank you for all your swift replies...it's so incredibly helpful to know that other people are out there. I think I wasn't really prepared for what has happened, and it seems there is hope, along with a lot of hard work.

    I feel quite emotional right now, but you have helped me find a sense of positivity I previously didn't have.

    I'm sorry that in some ways my state is quite selfish, given I'm lucky enough not to have had a head injury and i thank you all again for your experiences.

    D

  • Don't ever apologise for not having a head injury. Your life will be changed by learning what you learn now about it. You will view others in a different way and will probably be more empathetic towards people who you view behaving differently, because now you know there maybe a reason for it.

    I was guilty before suffering my illness and the resulting BI of judging people at face value. I now know that that is the last thing we should do. So in some ways my life skills have been improved by it, a harsh lesson to learn, but I'm one of the lucky ones who still has a good quality of life to look forward to.

    Be there for your Mother with all the love and support you can muster, but don't forget to look after yourself too, that is just as important.

    Best wishes along your journey and keep us posted.

    Love Janet x

  • Great replies to you there. Hang on in there and try to stay positive if you can. Thinking of you. xx

  • As Janet says, don't blame yourself for not understanding what is happening, recovery is different for everyone. Patience is the most important thing for your mum and yourself. Your mum will never know how just how upsetting this is for you but you are doing the right thing in talking and sharing.

    I can remember very little from the time I had my SAH. I do remember reading bits from a book in the waiting room at the hospital which I subsequently ordered from the library which helped me enormously. It was called Brain Injury by Trevor Powell. It was a long time ago so you may find something more up to date. It answered so many questions for me especially 'why' and 'is this normal'.

    After I had my SAH I was not offered any follow up in regards to my worries and memory problems but as on this site (which I have only just discovered) it helps to talk about your worries with people who have experience as a carer and those who have had the brain injury.

    Don't stop asking questions, it will help

    Best wishes

    Dawn 😀

  • Hi D,

    When it comes to recovering from a brain injury, I personally do not think anybody with a brain injury can fully recover.

    My brain injury was back in 1996 and I do not think I have recovered from it, my health has improved since first op but I don't think in any way that I have recovered.

    I have good days and bad days, just like many other survivors.

    When I see the word 'recovery', I think of getting over a cold. When you are ill, most people can't do a lot woth themselves but when you are feeling like yourself again, you have recovered.

    Brain injury is not an illness, it is not something you recover from, at least that is how I see it.

    Onto the memory. I have a better long term memory than short term. I think it is pretty common for people to have a long term memory but then it really depends on how the brain has been injured.

    Take care,

    MJ

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