Can anyone talk to me about Treatment after brain bleed?

[Sadformum]

DM is in a coma after a massive bleed. We have been told she will have another EEG. What does this show please? No response following admission, in otherwise good health, she is 72, knocked us all for six.

Fairfield general doctors and nurses are angels

So sorry to hear this, how scary for you. Her treatment will depend entirely on where the bleed was/is, how accessible it is and numerous other factors.

I had a bleed on the brain last year, had my head cracked open like an egg and a small part of the brain removed and as much of the blood removed as possible. But mine was quite rare; many bleeds can be treated with less invasive treatment - but I'm afraid you need to be aware that some can't really be treated successfully.

Recovery will be long even if the treatment works - she won't be able to drive for a long time and may have to take epilepsy medication.

On the bright side, neuroscience has come a long way and it's quite astonishing what they can do nowadays.

Good luck, just take one day at a time

Thank you both for replies. Glad and happy to hear of your successes.

I’m a mess and the uncertainty is so hard to deal with. We have been told to prepare for worst but that also it may not come to that for a long time.

If the bleed was really big there's unfortanately a risk of permanant brain damage - so even if the bleed is 'treated' the brain may never be the same as it was. The problem is that it's not something that can be predicted... only time (often months) will tell how she's been affected.

I haven't been in your position as I've only been on the 'other side', but DH says it was hellish waiting to see what I'd be like after surgery... as it was, I looked/acted like I'd had a stroke for a few days due to the damage/swelling etc.

Fingers crossed for you, hoping it's not a long/difficult journey

I'm sorry OP
An EEG along with imaging and her level of response will be used to give a prognosis.
At 72, a massive bleed and still unresponsive points to a poor prognosis.
Again, I'm very sorry OP.

My mum had a fair size bleed 3 years ago though wasn't ever in a coma. She was left with similar effects to a stroke with weakness down one side, extreme motion sickness, and memory deficits.
3 years on she is mobile and independent but not what she was she still gets tired quickly and has issues with concentration. She was given medications to break up the clot then once she could intensive physiotherapy and support. She was in hospital for 2 weeks then had support at home for 6 weeks.

I’ve been through this with my dp this year - he’s 50. It was massive and a coma for several weeks. It is very hard. Intensive care (I presume she’s in) is a rollercoaster I could not get used to. There is a glimmer of hope and then an infection...and all around you other relatives are getting good or bad news.

Dp had emergency surgery within a few hours at John Radcliffe. Removed the blood. The prognosis was dire - in fact we were told he was unlikely to make it or if he did he’d have very little quality of life - twice! But the op was a success. Then told no walking, no speech or understanding and not able to read.

His recovery has been remarkable. The community treatment has been phenomenal (he came home very very early in April due to the pandemic).

Honestly nobody can give you an accurate prognosis. At one point I honestly thought I wish I hadn’t rang the ambulance (I’m ashamed of that but it gives you an idea of how bad he was in the early days - just staring into space). Recovery is ongoing, but all the professionals are genuinely amazed at him - and he did not have a healthy lifestyle before this.

You cannot really listen too much to a prognosis unless of purse they cannot help her at all. There is so much that could go wrong or right for her yet. She’s still in there though. My dp didn’t know my name for months, but this morning 9 months on he made me eggs on toast and I can hear he’s put the washing on. We laugh every day.

I really hope you have some good news soon.

I was told to prepare for the worst too. The uncertainty is awful. You just cannot think about it too much. Are you able to be with her at all? Or are restrictions in place?

Still - thanks so much for all the info. That must have been hard to type as to raw.

Restrictions still in pace but can go twice a week.

Can I ask, was your DH responsive at all whilst in coma? Sorry is so personal

Hardly at all. Kept trying to wake him and he would open an eye but then they would have to sedate him as his blood pressure would rocket. Even when he woke, He couldn’t understand anything at all. No words at all. His language centre is damaged.

It’s different I think because he had surgery straight away. They were borderline not going to try and then the surgery went really well and then he just could not wake up.

You just can’t think about the future while simultaneously knowing that better times are possible. It’s an almost impossible state of mind. You can only get through each day for now. How dp was then is nothing like he was a few months later. It actually felt miraculous when he was able to look at me with one eye. Your mum is in excellent hands and the brain is incredible. Those are the things you know for now. Anything else is unknown really. God it’s horrible and I never want to go back there. But it’s so different now. Just keep going for now.

Oh yes dp knew we were there. Obviously not all the time - but he says touch and sound were important. She will sense you. It’s a massive comfort to her on some level.

Is your mum sedated and is she ventilated? Dp was both which helped a lot I think.

My DM had a bleed caused by high blood pressure. She was conscious and treated as a stroke in a stroke ward. She was unable to speak but did know us and knew everything going on and did become well enough to come home. Sadly a few weeks later she suffered a heart attack linked to the issues around the bleed and passed away.
Your DM may not have the same diagnosis at all and all you can do is take it one day at at a time and be guided by the staff.
Sorry this isn’t a positive story but as many have said there are lots of positive outcomes too it depends on damage and linked issues etc.
They may do a scan to see how large the bleed is and where it is you could ask them as that gives a bit more information on prognosis.

Thanks all. Still waiting for news. Covid makes everything so much harder 😢

She hasn’t even opened eyes in 5 days. I don’t know what to do. Feel helpless and worse than useless.

What are they telling you? I’m sorry this is so painful. Did they do the eeg. If they are not saying it’s the worst news it surely means they are still waiting to see. It feels unbearable, I know. One breath at a time.