Bleed on the brain

[Chook-chook]

My mum (55) suffered and unexpected bleed on the brain late November. She was in ITU for a month, went to a general ward for about 4 weeks where she received shocking care then went to a rehab hospital.

She went to the rehab hospital medically unfit and had infection after infection until it got very serious and she had a build up of fluid on the brain and had to be rushed back to hospital where she still is now. Its been 5 months now and it feels like she has one step forward and 2 steps back.

They fitted a drain in her brain to drain the fluid about 6 weeks ago and tried to remove it last week but she went down hill again meaning they had to fit another one.

The family are in such turmoil, we get our hopes up and then they are taken away from us again.

Stories I read, people seem to be home recovering in a shorter period of time, am I being to impatient?

We are also being kept in the dark from drs and it is near impossible to get any update or review from them. We cant even get in touch with them!!!

Had anyone experienced the similar with a bleed on the brain recovery time etc?

I need some hope!!

Thanks

[WardijaWardija]

Hi Chook.Welcome to the forum that nobody really wants to join. That said, I do, genuinely wish you a a very warm welcome.

I am so sorry to read about your mum and her beyond awful experiences.

Words fail me, or any that I'm permitted to write here.

You and all of your family must be literally pulling your hair out with worry and frustration.

By the grace of circumstances, I have no real experience as to the content of your actual post, but I am sure, very shortly, some other, more knowledgeable members will see and read your post and feel a connection and get in touch.

There are some very special and caring people on here . .

I wish you, your mum and your family, the very best of outcomes. X

[Chook-chook in reply to WardijaWardija]

Thank you, your words mean a lot.

[skydivesurvivor]

this road is very up &down for so many families, I wish u good luck & please come and vent y frustrations here whenever, hope we’ll be support for u good luck!

[cat3]

Hi Chook.

I was lucky to have been transferred by my local hospital to a specialist one within hours after a bleed on the brain (subarachnoid Haemorrhage) in Dec 2011. Apparently my family were kept updated throughout the ups & downs during the early weeks, and one point in particular from the consultant was that it's impossible to predict the outcome of brain injury owing to the complexity of the brain and the uniqueness of every patient.

So, armed with that knowledge their only option was to expect the unexpected and not be alarmed by odd developments or behaviours. I was allowed home after 3 months, with the proviso that the specialist nurse was always available, so very lucky compared to your mum.

Have you tried contacting the specialist nurse or the consultant's secretary directly via the main hospital switchboard ; both can be very efficient and helpful in getting vital information.

But if you feel your mum's complications and poor progress result from inadequate care or neglect you can contact PALS or the CQC connected to the hospital in question.

nhs.uk › NHS services › Hospitals

cqc.org.uk/contact-us/how-c...

But perhaps a word with the Headway helpline for some professional advice might be your wisest first move. They're available on freephone 0808 800 2244 during office hours..

So sorry to hear of your mum's plight m'love. I really do hope you'll find some clarity and explanation from one source or another and, most of all, that your mum will rally and progress.

All best wishes, Cat x

[Dogsabighelp]

hi chook,welcome to the group which no one wants to join!that said,i think i perhaps would have lost sanity without the freinds and support from the wonderful people on here.i,like many others have faced frustration trying to get information from the powers that be,always remember that your mum needs you to do for her what she would do for you if the roles were reversed.if i were you i would firstly ring the headway helpline they should be able to give you a better understanding of your mums condition.then contact the hospital pals team,they will go directly to the doctors/consultant dealing with mum and are usually very good acting as a go between.most of all,dont be afraid to speak up and voice any concerns you have.all the best to you,and hoping for a great outcome for your mum.please keep us informed,we are all rooting for youxx

[WardijaWardija]

Hi Chook.Looks like you got some helpful support on here 🙏.

How is your mum (and you) doing?

[Dogsabighelp]

you ok c?we care and support you