Mixed messages

[Eastlondonlady]

Hello.

Only joined today , im.feeling a bit lost.because my boyfriend had AVM surgery but he had a bleed on the brain and is now in critical care on a venterlator and brain drain. They said he has brain damage but.wont.know how much until.he wakes up. His opens his eyes ometimes and.has just started moving his arms and legs. He nodded when I asked a question and turned when the.nurse said his.name. The thing is I keep getting mixed information from staff. Some say its a good start.and others are full of.doom and gloom He is still sedated a bit.surgery was 3 days ago. I try and be positive. Will.the.hospital.keep him in critical care if.things don't.improve more? Is there another ward patients get.moved too. I'm just worried sick and an emotional reck.at the minute.

[Alibongo60]

Hi east London lady, welcome to our site you will get lots of useful help and support from the wonderful people on here when they wake up, till then you’ve got me, sorry. What I will say is it is very early days and the docs will always err on the bad side anything other will be brilliant. I was told if my aneurysm ruptured it would be catastrophic, well it did, a substantial bleed, and it wasn’t I am still here fully functioning, although struggling keeping the brain working, the signs your boyfriend has shown so far moving and responding all sound hopeful, so grasp at those for the minutes, and yes as he improves he will be moved to normal wards, it may be a long road, the brain is a slow mover, but I wish you lots of luck and love to you both love Alice xx

[Eastlondonlady in reply to Alibongo60]

Thank you so much , yes I think any movement how ever small is a good sign . I'm glad to hear you are OK x

[BRLB96]

Morning, I’m sorry you’ve had to go through an audile like this, it must absolutely be a worrying time. I myself sustained TBI (Traumatic Brain Injury) two years ago to date nearly. I too had bleed on the brain which needed surgical intervention. Mine did stop post surgery and I was kept sedated for two weeks to begin the healing process. What I would say is that on the brain injury scale my injury was rated pretty severe and from what I’ve heard some of the staff, whilst they didn’t say so, did not think my outcome was looking that promising.

I think you have to take in mind that nobody knows how brain injuries can be as I believe all are very complex and all our brains out so different so recovery is different. Nobody in that hospital knows what the outcome will be. All I can say is stay strong and trust the process, he has every chance of having a good recovery.

Try your very best to stay strong for yourself most of all but your partner too. Trust the process. The positivity is so important so try and keep it going as it’ll be good for both of you. He every chance of having a good recovery. Make sure you get some rest if you can as fatigue will certainly worsen your mental state.

Good luck and well done for being so strong already, amazing!

[Eastlondonlady]

Hello , thank you for replying, I'm glad you proved the doctors wrong. I'm trying to be positive , I gave my boyfriend some strong words when I visited him the other day and that's when he actually nodded slightly twice , but hospital seem to be concentrating on the negative side . I think any move or eye opening is a good sign. It's so comforting to hear from other people who have or have had similar situations . Thank you x

[New_beginning]

Hello Eastlondonlady, drainage, sedation, ventilation all normal at this timescale Health professionals will not give positive outcome. My husband had ICP monitoring, drains, tubes everywhere, on ventilator for life support, had to take our son to say goodbye, told he would require 24/7 care, wont walk, talk etc... 2wks later home with severe behaviour, I gave him 5months 24/7 care, nursing and now 75hrs per week caring, 15months later behaviour settling slightly, can cook supervised, the rehabilitation I put in still purely on family functioning we have 3yr old and 15yr old, I'm not anti medication but I weaned him off several with professionals review to support his awareness. Husband still not at stage to have BI OT as hes not safe to do so, he does have short term memory, word finding difficulties, fatigue, symptoms like stroke on left, hearing difficulties, tinnitus and behaviour difficulties.

Life will be different, But devotion, love, resilience, hope, belief will support your inner strength with supporting on his recovery. Stay strong mentally and stay healthy. Dont be put off from professionals my husband has proved them all wrong, I know this is from our experience but your got to stay positive for own sanity.

[Eastlondonlady]

Hello , oh wow sounds like your husband has made a lot of progress . He sounds like a strong man and having your love and support must of helped so much . Thank you for your encouragement. My boyfriend is very strong willed . When he had surgery 2vyeras go he proved them wrong with his determination. So I hope when he starts to be more aware he will.be again . I know the road to recovery will.be long and will.be there for him . Trying to be positive . Thanks again x

[New_beginning in reply to Eastlondonlady]

That's the attitude this will be horrible rollercoaster, remember strong men have strong women beside them.

[Eastlondonlady in reply to New_beginning]

That's so true ! Thank you x

[cat3]

Hi Eastlondonlady. Three days is such an early stage to make any assumptions about your boyfriend's condition. After a bleed on the brain no doctor will commit to a prognosis as it can be many weeks before signs of meaningful progress appear.

My family only received none-committal answers to questions of outcome and were repeatedly told 'We wait and see'. I was discharged at the 3 month point after (what my loved ones described as) a 'lifetime'. It will feel like that to you I'm sure, but your partner's brain will benefit from being inactive and quiet as it recalibrates and finds its way back to the here & now.

On my first recall appointment my wonderful neurosurgeon showed me the 'before and after' scans of the bleed and I called him a magician. He poo pooed the comment saying that he just got a massive kick from saving lives.

Hang in there m'love ; you've found a good place here amongst hundreds of survivors....

All best wishes and stay in touch. Cat x

[Eastlondonlady]

Awww thank you Cat , I was feeling upset last night but reading stories about how people have overcome similar hurdles with themselves or loved ones made me feel as though I wasn't alone . I'm so pleased with how well you have done .xx

[cat3 in reply to Eastlondonlady]

Keep us updated when you can m'love xx

[cyclinghu]

I wish him all the best and a speedy recovery. Wish you all the best too and hope you can find support during this difficult time. I had my TBI in February this year with bleed to the brain. My wife has been remarkable - I can't remember much of the first month while I was in hospital, but she was so supportive and kind - several months on and she has stuck with me during my down moods - I hope one day to make a full recovery but I have learnt more than ever during this awful time the meaning of true love ❤️. This is a great website full of people who understand the true devastation of brain injury - so glad you have found it.

[Eastlondonlady in reply to cyclinghu]

Hello , thank you . Its so comforting to hear from people that have been going through it too. I'm glad you have your wife's love and support to keep you going . Everyday must be a struggle sometimes for you but for you will.get there . X

[claretand]

Hi, my wife is almost 3 years post TBi, the consultants and nursing staff are always cautious, in reality they just dont know. If he responds to his name and is tracking then that is a positive sign. My wife was in a coma for over 3 weeks and she responded to her name and was tracking as soon as she woke. You will reconise personality traits better than the staff, its a difficult time because of the unknown and is a constant mind drain. I assume as a East Londoner he is a West Ham fan, surround him with what he knows best. I wish him all the best. COYI

[Eastlondonlady in reply to claretand]

Hello , wow that was a relief for tou and your family . I hope your wife is doing OK now. I expect things to be different when he properly comes around but along as I can get him home at some point in the future we can give him the love and support he needs . No actually we're Spurs fans lol . But thank you for taking the time to reply xx

[lcd8]

Hi Eastlondonlady. So sorry to hear about your boyfriend. I wish you both all the best. I too have an AVM but mine hasn't ruptured so far. Despite this I do have a few issues that appear to be worsening with age. Anyway, not sure how much this will help, but one thing to bear in mind is that the brain is a really complex organ. And any damage to it is also a bit different for everyone. So its worth considering that what worked/was experienced for one person may not be the same for another. On saying that I think we'd all agree that brain injury recovery is a really long and arduous process. I know it sounds awful but you'll need to give your boyfriend lots of time to recover and don't expect too much to happen at once. Small steps and all that. It will happen but patience will be essential. Best wishes, Lulu

[Eastlondonlady in reply to lcd8]

Thank you , yes im expecting it to be a long haul , I'm so glad he has been doing things and that keeps us all going . I praise him.when I get to see him and he knows I'm there .I hope you are well x

[lcd8 in reply to Eastlondonlady]

That's great and I'm really pleased. Hopefully he'll go from strength to strength now. All the best.

[Eastlondonlady in reply to lcd8]

Thank you x