partner has lost 70% of left side of brain ?!

[Arsenalfan1986]

my partner about near 3 months had a huge bleed on her brain stoke resulting in the removal of her skull to relieve pressure and about a month to two months in a sedated coma. Fast forward to now she is awake bed bound atm but talking not much in terms of movement in her left side she has developed a twitch or tick head movement but honestly although it’s been hard I can only count my blessings. Today the news from the doctor is from a scan it shows 70 percent of her left side of her brain has died it’s something that has hit hard and honestly I’m in shock my question would have to be what can I expect from this point on and are others in the same boat how is life for you or family that’s effected thank you for reading

[philbou]

Hi buddy

Hope your ok please stay strong

The plain and simple truth is no one knows not even the doctors it a long long waiting game

It a long journey to your partners recovery and you must be there to guide her and help And one of the first things to remember it to look after yourself you are now a kingpin

If you fail everything else falls down around you

I hope you keep posting and checking in on here

It helped me a great deal

Me and Vicki are wishing you the very best and if i can help in anyway i will

Stay strong

[Arsenalfan1986 in reply to philbou]

Thank you mate it’s a bit of crazy thing to get my head round as I can chat to her she has a bit of ICU delirium but it just makes no sense to me how some one can loose 70 percent of her left side of her brain but be able to do the things she can do like hold a conversation remember the past and such and granted she has post stroke issues but when you think of someone with that amount lost it just dosnt seem logical thanks for replying bud

[philbou in reply to Arsenalfan1986]

Its good she has some speech really good

Remember she will be on some heavy meds

Ask yourself this how can they say shes lost 70% its bullshit talk by consultants

Try not to read too much into any comments they make

only you can only know your partner and any deficits she has i wish id shouted at them more lol they are life savers but only you knows your partner how she was before

Vicki was in hospital for 637!days before she came home

Were now at 4 1/2 years post bleed

They wrote her off too

She was discharged with never walk talk again and will need 24 hr care

She home nearly walking talking not so much life changed for us immeasurably but we've adapted

Im more worried about you It a terrible burden to bear and you will need help too

Ill always try to help its my duty too

Rehab means shes moving forward !

Onwards and upwards

Ps im a wednesday fan.

[Arsenalfan1986 in reply to philbou]

Il do what ever I have too I have a type one diabetic child too so I’m used to high stress it’s part of my life even before all this awful stuff happened but they say it’s gona be a long road to recovery so I’m taking it a day at a time so far it’s taught me where there is good days there’s going to be equal or worst days just is very hard but your story does bring me huge relief your are an amazing person dude

[philbou]

no buddy im in awe of you

One thing i wished i did was keep a diary It does help

My memory get hazy of icu. I remember the people but not there names

[Arsenalfan1986 in reply to philbou]

What did you mean by the last bit mate bout your memory gets hazy of ICU and about the people sorry ?

[philbou]

things like what meds names of the nurses stuff like that its also helps when you can look back and see the massive improvements

Vickis bleed happened 12 days before we were due to go on a 3 week holiday in the usa We took the grandkids swimming one sunday morning sat in the park watching them on the swings and she just said ow i feel funny that was it the pop

March 17th 2019 changed all that

Vic has acom pcom and right mca aneurysms and a small one on left mca they not touched

She had one coil two clips her brain swelled after surgery secondary vasospasm and she had a decompressive hemi craniotomy then induced propafol coma triple h therapy tracheotomy and if that wasn't enough to scare me she had a blood clot in her arm and had emergency surgery to remove that

I remember the name of some drugs i never remembered the names of the nurses or doctors or consultants

I remember the 13 flights of stairs because the lifts were often too busy in the hospital ive never been fitter

I lived at the hospital i also nearly crashed the car on the motorway on the way back home through lack of sleep

I had 6 weeks off work initially went back to early and had a breakdown and had nearly three months off i had counselling myself for 4 years on and off and probably still need it now

Vicki had seven weeks in hospital and then had 11 months in rehab then onto a community hospital then covid hit and they cleared out the hospitals and into a care home that felt like a real failure to me. My dad was in a home i know what there really like day to day

In between that i built an extension to get her home spent our life saving on it all during covid. Looking back ive no idea how i did it all

Ive also done most of vicki physio arranged her benefits sorting house everything you can think of to run the house its long and exhausting and im still working full time

I know the ins and out of how the nhs works and the stuff you'll need to do and where to find the help you'll need

Thats stuff off the top of my head

[philbou in reply to philbou]

Everyones situation is different

But theres a lot of help to be had on here

Im eternally grateful to the help and the support they given me over the last few years via this forum

I can only hope to match that and help back As much as i can

[Arsenalfan1986 in reply to philbou]

You are amazing mate your wife is very lucky to have met such great guy i am also working but feel like I might have to give it up I have no clue what to apply for the hospital she is in hasn’t really said much in terms of information as in what am I looking at long term so my life is just a day at a time

[philbou]

you're doing the right thing so far no one can tell any outcome yet

Everyday is a new day and its a day on you and your partners rollercoaster to recovery

The hospital teams are the best in the world at what they do

Theres a pathway they will follow and nothing gets done without best interests at heart There are NICE guidelines they will follow

Icu Hdu General ward rehab place and hopefully home with a care plan in place and support

Vicki was in hospital and care for 637 days

Your still in the wait and see clinical phase simply because they don't know anything yet

Coming out of a coma is nothing like on tv and films Part of it is the slow reduction in drugs and theres some pretty heavy drugs they use

It was week 9 when they put vickis skull back on it was sewn into her belly fat to preserve it Thats to me when she became whole again

Have faith in your wife strength keep holding her hand talking to her

I sat a read to vicki the count of montecristo Vicki says she remembered non of it But for others it worked

Its something to keep your mind occupied if not your subconscious will play havoc with your thoughts

Stay strong buddy

Were wishing you all the best we really are

[Arsenalfan1986 in reply to philbou]

Thank you bud I am great full for any well wishes with how things are il take what I can get

[Wittycjt]

I’ve had multiple strokes but no brain surgery. My strokes were due to several clots in my brain due to an autoimmune disorder. They said it looked like a riffle went off in my brain. I had to learn the basics all over: feeding myself, toileting, walking ( which they thought may not happen). When all was said and done. I am doing all of what they said may never happen…They could not tell me what ‘was going to come back” , I did not believe them anyway. I knew I had to do what I had to do for me or I would not be okay. People who look at me now say “ I would have never known”, but I know. It was a rough, hard comeback. I kept telling myself the brain believes what the mind tells it tell it positive, assertive things. Point is they don’t know… they would like to think they do, but they don’t. Hang in there, it is still early in the game and you may be pleasantly surprised. I don’t know if you are religious, but I have said a prayer for you and her. God can help in mysterious ways. Please do “passive Range of motion” on her if she is unable, it will help when she starts to progress on her own, if you don’t know what it is, google it…it would have helped me with/when walking and moving arms, fingers, joints, etc. keep us updated