Serious brain injury

My partner had a motorbike accident and has a serious head injury 2weeks ago. He had cpr at the scene and damage to the brain. In the last few days he started to open his eyes and yesterday he moved his arm slightly sideways when asked, he looked at me the whole time. The nurse doesn't see and all the tiny things he has done, they say, its a reflex. The neuro surgeon has said he will never be the person he was and they don't see any significant change since he came in and they want us to think about what he would want. Withdraw treatment or not. He loved the outdoors, cycling walking etc. I am so mixed up what is the best thing for him to do.

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  • Please don't give up hope. You will soon get replies from many people on this site who have been in your partner's situation and have surprised everyone by the way they have recovered. No, he probably will never be quite the same person he was, but he could well go on to lead a perfectly good life. The brain is an extremely complex organ and it takes a long time to recover.

    Do look after yourself, rest when you can. You have a long road ahead of you. Talk to him as much as you can, play him some of his favourite music, anything to stimulate him gently.

    Take care, and do let us know how he gets on.

    Jan x

  • Hello there Sue how frightening for you and your partner.

    I think it is a bit early yet for them to start making such suggestions. Please ring Headway after the bank holiday and ask them for advice also, you will find them very supportive.

    It does take a long time to recover. Its a long time since I was in ICU but I do remember being able to hear everything that was going on around me and discussions about me. I just could not manage to open my eyes!

    We are all a bit different to how we were before, some worse than others but never give up hope as Jan says.

    Keep talking to him and stimulate him with music and so on. You know your partner best so remember that we are rooting for you and again, ring Headway on Tuesday when they are open and see what support and advice they can offer. Keep talking to us here if you find it a help.

    Best wishes, in my thoughts,

    Nan x

  • I agree - please don't give up hope. Two weeks is extremely early days and you will find many positive recoveries on this site which started in a similar way. Stay strong and keep in touch with us all if you need to. x

  • Thank you so much for your replies. I speak to Alex power, from headway and she gives me positivity. Its when I am in the meetings with the neuro surgeon, consultant and intensive care Dr. They are telling me he could be severely disabled, may not talk or be able to feed himself etc. And every little thing Alan does, they say its a reflex! They say he has not made any significant progress since coming off sedation and a week after, he's doing little things. But they go on the Glasgow coma scale!

  • Sue, this is exactly what my family were told, that I would probably be in a permanent vegetative state, nothing is further from the truth.

    Yes, I have some issues, mainly to do with fatigue and physical, also some loss of vision in one eye. But I am so glad my family hung on in there, be strong and don't give up hope xx

    Janet

  • Hi Sue!

    People always give a worst scenario just so that you are aware how things might be.

    The truth is that they are only giving you their best educated guess. Keeping you and Alan in our hearts and hope that there is a bit of progress over the next few weeks.

    The Glasgow coma scale has been around since 1974! It has its critics.... so bear that in mind.

    Good to hear that you are speaking to Alex...and sending lots of good thoughts... you are doing great i am sure Alan knows you are about and care xxxx

  • Thank you ♡.

  • Hi Sue, see my reply to KittyCat007, it will give you an account of my recovery from the coma I was in for 3weeks and being on life support.

    I'm sorry I'm not able to rewrite it for you, but if you would need to ask anything further please don't hesitate to ask.

    Janet

  • Hi sue I was in a very similar situation to you in January it is very early days to even consider withdrawing treatment I replied to kittykat007 if you would like to read. If you would like to message me about anything please feel free x

  • Hi Sue. At two weeks in, my son had only opened his eyes. He didn't become conscious until about 6 weeks. Before that time, his friends and family had seen the odd glimmer of movement - but the nurses and doctors hadn't. It took a few more months before we were seeing full body movement. Yet now, he plays sport, drives and lives independently. Yes, we still have word finding and memory issues - and his amazing coordination and rhythm has yet to return. But we're getting there and we NEVER give up hope. Stay Strong. x

  • I have never been on a sight talking with others and I am amazed and thankful for all your positive replies. Today has been so positive and the nurse saw some of the things he has done and has documented it. I will definitely not be giving up on him, no way :-) x

  • So pleased to hear that keep fighting, When my daughter was in icu the doctors are very blunt they give you a diagnosis on the scans etc but the truth of it is, is that they don't know what the outcome will be, my daughter is 4 months on now and still making improvements although still a long way to go any improvement is a positive xx

  • I suffered my TBI due to being struck from behind whilst turning right on my motorcycle. I came out of a coma six weeks after. I remembered a couple of visits and I remembered a particularly beautiful nurse when I returned two months after my eventual discharge for the surgeon to see the result of his handiwork.

    You must understand that each case is very different.

    I acquired a totally new persona, a new personality. The old Paul was dead and gone and never to return. I did retain my technological knowledge on my hobby though.

    I suffered loss of short term-memory, stuttering for words and unable to really recall much that happened. That eventually rewired itself and although it fuctions well today certain 'fast' responses I need, such as reading Morse code, cannot be done.

    I am epileptic, not grande mal but taken to quiet moments when I am away with the fairies; still occurs today.

    When I walk I always drift to the left; my spatial awareness is not all it should be and I am forever bumping into things.

    I developed a terrible temper; I can control it now but I used to fly of the handle and the slightest thing.

    My libido was affected; I just couldn't get enough - girls watch out - that was no joke. Something else I control now but it can still be an embarrassment to me.

    I suffered from severe headaches [I mean *severe*]. Used to take paracetamol as though they were going out of fashion but they were of little help. I was always tired and could fall asleep at the drop of a pin.

    Out of all this the worst I suffered was loss of self-esteem, frustration and depression. I lost all my friends with three weeks of coming out of hospital; to this day I don't have more than two.

    My girlfriend was the first to go, not that I blame her.

    The motorcycle accident was at 0745 on Sunday 9th July 1967; I was almost 17. Today at 67 I am still working at my University, married with three children and have our own house.

    I'm still epileptic, still suffer deep depressions [I try not to let them get me down] and my libido still troubles me .... to the point that I recently had an affair and which has obviously caused my wife and I marital problems. Thank heavens my wife has let me have a second chance.

    Work was a problem; any mention of neuro surgery or epilepsy meant no job years ago; During recovery I studied for and miraculously gained my professional qualifications.

    Do I take any medication? No. Stopped that two years after my TBI.

    Today? After 50 years I suppose the recovery is over. I'm ok. A recent visit to a neurologist really made the point that I am 'lucky to be alive' and should be very thankful the recovery I have is as it is; I could be so much worse.

    This is from someone of whom my mother was told I wasn't likely to survive; if I did I'd be a vegetable ..... well, no so.

    Good luck to your partner with his recovery Sue. You must be aware that no two cases are the same and that it takes time for things to change.

    Best ....

    Paul

  • Thank you Paul for the insight into how thing's can be. The neuro surgeon said every brain is like a fingerprint and I should not listen to other peoples recovery. If I didn't see Alan do anything at all, then I would understand what there saying, but I'm seeing him do small things each day I see him.

  • Hi

    We were in a very similar situation 2.5 years ago. About 10 days post accident I was told that there was very little hope of M recovering and that any twitches were just reflex responses. I remember one of the critical care nurses telling me that I may need to start thinking about what he'd want and whether machines were the right thing. I remember telling him that it was time to stop messing around and start responding.

    Amazingly the next day he did start to respond very slowly. I'll be honest though - you then enter the world of what he's going to be like when he does wake up. Will he still have his memories or his character? I found it was a long series of small steps.

    M spent 6 months in various wards at Addenbrookes and then 9 months at a BIRT rehab unit in Ely. Initially he had no use of his left side, had to have all his personal care done for him and couldn't use a knife and fork. When he came home in December 15 he could walk around the house with a stick, help with his personal care but still needed a support worker the entire time I wasn't home.

    He's now walking around with minimal use of a stick, does all his personal care, goes to the gym, looks after our cat etc. It's not a full return to pre accident and it's still difficult for both of us in different ways but it's a huge difference from what they predicted. As you'll learn from this forum and the hospital, every brain injury is different and the medical staff have to be blunt.

    Feel free to message me if you have any questions or want to vent. It is a very long process so make sure you take time for yourself. I soon realised that I couldn't be everything to M and still work so had to balance what I could manage. Make sure you speak to your GP and take all the help that's offered from Headway and social services when it gets to that point.

    Sorry for the post but I know that reading comments from people much further down the journey was helpful.

    Jude

  • Just reading comments from people, on both sides of the coin, is so helpful and its only just been 2weeks. I know we have a long journey ahead and I

    Will be there with him. I will feel better once the Dr's see he's worth helping.

  • Two weeks is no time at all! When you say withdraw treatment is he on oxygen? Is he breathing unaided? When I was unconscious and after I woke up a nurse was always stationed at the foot of my bed in the ICU to log any changes and generally monitor. They will see if his eyes follow anything or he blinks on command etc. Hang on in there as it is early days.

  • He's breathing himself, but still has the vent down his throat, but thats more for support. He has been following people moving and he blinks, but not on command. The last day he tried to slide his arm up to his tummy when we ask him to, he kept his eye on the photos while I kept showing and talking to him. Thankfully, the nurse saw some bits and noted them.

  • The withdrawal can be, if he has

    An infection, they won't treat him, same with cardiac arrest, thing's like that. He had cpr at the scene, but hes a fit 41yr old. His heart rate and pb and breathing are him.

  • Sue I can only echo what others have said, be strong and there for him ,his going to need you

  • keep fighting sue as specialists can be Wrong,not saying its a breeze but fight an only you will know If an when,I had cpr,an was electroed,back 3 times an im here to tell the tale.Never give up hope an talking to him .as for the rest I echo the rest phone headway,an my prayers our with you hun

  • I am now feeling a little anxious, as he is not doing much so far, its like yesterday he was a star and today is worrying me for tomorrow :-(

  • Sue, his brain is working so hard to recover. There will be steps forward and back. Just don't give up hope. As you will have learned from the posts here, many, many people make good recoveries, even when the doctors thought there was no hope. Just take each day as it comes. Many people have found it useful to keep a diary each day. Write down the things you are told, everything he manages to do however small. Look back on it from time to time and you will begin to see a difference.

    Don't forget to look after yourself. It is very easy to forget this with everything that's going on but you will need all your strength in the months to come.

    Keep us informed of his progress.

    Jan

  • The ward sister has just said, they are looking at withdrawing treatment and I should prepare for the worst and they don't need permission. Its so unfair that I can't stop them. I feel at a loss :-( .

  • Is there a PALS at his hospital (Patients Liaison Service). If they are there tomorrow go and talk to them and find out what rights you have. Maybe you need to talk to a solicitor if you know one?

    In any case, ask them to do nothing until after the bank holiday when you can phone Headway and ask them your legal position.

    What an awful position they have put you in. We will be thinking of you.

    Jan

  • Sue I am so sorry to hear about this. The PALS is a good idea and headway.

    Unfortunately, a relative of mine had a stroke and because he had dementia,

    the doctor treating him blamed it all on the alzheimers and not the stroke despite a family history of strokes. They totally neglected him.

    The monsters wanted to put him on the liverpool care pathway without our consent.

    We fought against them or tried to but I think they just did what they liked.

    (Even though I asked to have him treat at a private hospital and would have paid for it, I was not allowed to).

    Regarding brain injuries, it's really early days with your husband. I hope he will show more progress.

    At the time we had problems, I asked the family solicitor what to do about this at the time. He told me many solicitors are not experts in medical issues.

    The family know more than the solicitor would and the fees per hour are horrific. Unless someone can put you in touch with a pro life organization or christian organizaiton who can advise you.

    Our family solicitor suggested we contact the hospital director formally in writing and ask for a case conference. Compose a letter to him or her now outlining your concerns and evidence you may have. Send it recorded delivery if need be.

    Keep notes and a diary about your husband's progress with all details. (If you have a smart phone, use it for video).

    A friend of mine is a legal advisor at an international court. She is not in a medical field but works in human rights.

    She said this organization was a good place to start with regarding human rights and medical cases, the NGO liberty

    liberty-human-rights.org.uk/

    Cases have been brought against the UK in the European Court of Human Rights (ECHR) for violation of the Human Rights Act of 1998.

    This act states that people have a 'right to life'. (We are still in the EU, no Brexit yet so we must fall under this act still).

    She advised me to think about making contact with journalists as it might bring pressure to bear against the doctors making decisions the family doesn't agree with.

    (I did not do this at the time).

  • I see lots and lots of other people have said this, but: don't give up! I had my accident in 2005, and the doctors (in France) told Mr Flump I was brain dead. Thankfully, once I had come back to England (on a flight paid for by travel insurance), and MRI scan showed the brain was not dead. It took me 8 months to get out of hospital, and 18 months to get back to my job as a university lecturer, but I *did* get back there!

    The recovery is unpredictable, but - don't give up hope. I really hope it goes well.

  • Hi Sue, I've just been reading your nightmare and I use that word as from my own experience I know how hard it is.

    My husband was on a cycling trip last August when coming down Galibier (a dangerous mountain), he somehow went over the side.

    He had a number of injuries, broken ribs, broken vertebrae and a fractured skull in two places. He has a bleed on the brain, which then developed stenosis of an artery.

    When I flew to France I didn't know whether he'd still be alive, but he was.

    There was an awful language barrier but one thing was clear he was fighting.

    He was on a coma for two weeks and He then went on to develop a DVT and pneumonia.

    When he woke he struggled to breath for himself. He couldn't sleep but His eye movement was towards the right but always looking up. I often say it looks like the lights were on but no one was home.

    The nurses tried to get him to move but he didn't even look at them. I remember talking to him and telling him to blink once for yes and two for no. It worked! I sat with him when I was allowed which was 2-9 daily but I saw many things they didn't.

    I know had he had his accident here I believe they would have given up and that's a scary thought.

    41 weeks later and unbelievably he is back at work and riding his bike. He is incredible.

    Talk to your partner, he can hear you. I pray it all works out for you.

    Tammy x

  • Thats what he does, I was also told the sides of his brain moved separately, this will have broken the connectors and his brain scraped against his skull causing lesions. I am trying the blinking, but he slept most of the day yesterday. Today is the meeting and pals or headway are unavailable due to the bank holiday. They also said there is no point doing an mri scan, as there is no significant change and the ct scans have not changed. I won't be agreeing to withdrawal though.

  • Hi sue it's sounds like he has a severe diffuse axonal injury like my daughter has, I would get the exact medical term for his injury then you know what your fighting against. Ring headway they will advise on mental capacity act,court of protection, best interests as they call it and what action you need to take next, I would imagine it's quite a process to withdraw treatment when somebody is fighting for him stay strong x

  • I found he had a good days and bad. Getting him to 'perform' was tiring, it zapped him of his energy.

    Anyone with a brain injury could be compared to a computer wired up incorrectly- with time and patience (a lot of both) he can begin to recover.

    I didn't realise how resilient the brain is. Despite the battering my husband took and the trauma he suffered it repaired itself. I know a factor that played a huge part was that he was physically fit (I'd have been stuffed).

    I am thinking of you today and if you want to talk please just message x

  • I'm sorry, is it just me or is the behaviour of these medics at this hospital really bizarre?

    A ward sister telling the next of kin that "they" the hospital don't need permission to withdraw treatment??? After two weeks? And saying that it isn't worth doing another mri?

    No... it doesn't work like that... contact Headway first thing in the morning.

  • You are all so supportive, thank you. Today has been emotional, but positive.

    The consultant has had talks about him today and they are now giving him a chance, as they have seen some small changes. So now they are gathering people like the neuro rehab to see him, over the next few days. He is still saying, he will have disabilities, they say he is paralysed down the left side and possible loss of sight in his left eye, also

    Not knowing if he can talk etc. But they will not be withdrawing treatment at this time. One small battle won.

  • Brilliant news so pleased for you x

  • sue don't know why I never thought of it before but headway is brilliant like others say but unfortunately,not in all cities,.If they are like here in Liverpool its not big enough to assist major problems,so check the brain injury charity out too.As I don't know were you live an headway will be back logged as brilliant charity,So look online if you can for your nearest brain injury charity, an good luck,happy he's given a chance by medics an I will be thinking of you,x

  • Keep remembering that these are VERY early days for you and your family. Some days can go by with very little progress and then on other days you may take big steps forward. It's not consistent. My son also had diffuse axonal injury (which sounds like the description your consultant gave you...). And lost the sight in one eye. MRIs may show you which areas of the brain have been damaged but not even the consultant can be sure at this time how that damage might impact your husbands life. We just have to wait and see. Keeping a diary is very important and (3 years on) I still refer to mine. It was in fact over a week from the accident that I started our diary as I was unsure whether my son would even survive at that point. But with the family's help, we went back to the beginning and filled in the gaps - then I kept It going for two years. I'm so glad that I still have it to refer to - it makes me proud that we all managed to just hang on in there! Stay strong. X

  • Did you speak to Headway Sue? Let us know!;)

  • I am in constant contact with Alex power, she's been amazing :-) as have all the support on here. She is going to help with regards finances etc too.

  • Hi sue hope things are improving for your partner can you let us know. We are all here for you x

  • Hi sorry I've not posted more yet. It's still an up and down with the Dr's, last Friday another consultant spoke to us and said the neuro specialists, that includes the rehab one, are saying he will be severely disabled, not talk feed himself or ever lead an independent life and we should think about what he would have wanted. This is the 2nd time they have said this. We meet again today. Over the weekend, Alan has been moving his arm up to reach things we put on his tummy, this is when we ask him to do it. He has been looking at me when talking to him, squeezing my hand. Not always when I ask. Then Sunday, he moved his toes on both feet and yet they say he will be paralysed down his left side. He moved his left big toe when his uncle told him to. They are putting him on a machine that makes him work harder to breath, this is so the vent can be eventually taken away. I was struggling to decide what is best for him, as he was an active man before, but in 3 weeks, I have seen him improve. They still say some of the things he does are just a reflex. I know its a long hard journey and we have yet to find a way to communicate with him, but I can't give up on him.

  • Hi sue noticed you haven't been on for a while hope things are improving for you x

  • Hi sue, tough times i know! Three months ago today my 24 year old son george choked in his sleep on his vomit, which was due to him having an addiction to prescribed painkillers and has now been diagnosed as having a hypoxic brain injury which is inrepairable. When he went into icu he had a glasgow coma count of 3, they induced him into a coma for three days. When they tried bringing him out of it he was unresponsive and they suspected brain damage. He had a brain scan and was told the results was terrible and was told he would be unresponsive to us and probley woudnt live after they turned machine off as he was only 30 per cent breathing by himself. We were told to say our goodbyes, which included my six year old grandson saying bye for the last time to his daddy. He beat all odds and by the end of the day was 100 per cent breathing by himself. He is now in rehab, he knows who we are and is talking and cursing at us and also laughing and sometimes even singing. But getting better very slowly day by day. He cant use his legs but having phsio daily, and was being peg fed but last week was introduced to pureed food, (as he needs to be consistant with swallowing. So basically he is having to learn everything again. I pray that they give your partner a chance, as there are no brain injuries the same, and if he is showing small responses there is hope xx

  • Just a quick update. With Alan, he has gone from wanting us to withdraw, to now fixing his pelvis and waiting for a bed on high dependency unit. He has come on so well,he's awake moving his arm and has even tried to move his right leg. Although he can't talk, he does hand signals, although I don't always understand. But in 5 weeks, he's been amazing :-)

  • Little steps, and lots of faith, keep going sue, and keep strong. We were told last week that by looking at my sons new brain scan theres not more room for recovery (he obviously wasnt told this), yet since then he has been lifting his legs and has so much fight and determination its him thats fighting and who knows what tomo will bring.?!!! Keep fighting alan

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