Answers needed

[StephanieCB]

I'm desperate to find out if anyone has any experience of metal capacity returning after SAH? I know that everyone recovers differently and no 2 brains are the same but I need answers. I HATE not knowing what I'm dealing with and I know it's early days (God I hate that phrase) but I just wish someone would guide me one way or another, even if its a no, at least I would know, but the team involved with hubby are just so vague, its driving me crazy. Any one got any insights?

[Kirk5w7]

It's so difficult Stephanie, no-one can say. I can only speak personally, my ABI was caused by encephalitis, swelling not a bleed or trauma. I expected to be back to normal once I left the rehab unit but it slowly dawned on me that wasn't going to happen. But, I've been lucky!! My mental capacity is largely unaffected, there are some slower executive functions, but I've worked hard to minimise the effects.

I don't know, just where the lesions in my brain are so I don't know whether what I do helps or not. I just keep trying, and have been doing ever since I became aware of my situation in hospital.

My husband and family have also helped no end, in the first week at the rehab unit, my sister had made me a perpetual calendar that I, and the nurses and care assistants and cleaners, used to check every day to make sure I kept ip with date etc, my daughter brought me jigsaws( children's ones) to practice and I tried every day to read although I was somewhat dyslexic, that disappeared eventually.

My daughter-in-law sent me crayons and papers to copy and help me learn to write again, she is a primary school teacher so I got all those sheets of shapes and zigzags and things that help children learn to control pencils when learning to write.

We presumed it was like teaching a small child to learn, that was how the walking came back, it wasn't easy, in fact it was very hard to admit that I had to relearn these things, but in my case, and I stress that, the pathways were largely undamaged, but I needed new connections to join them up.

I have still got big problems, severe fatigue, I can't work again, but I have a good quality of life, I have plenty hobbies and have learnt how to get the best out of the day.

We go to the cinema and out for meals occasionally, but noisy, busy environments are a no-no, so the visits to the pubs in Manchester that we used to enjoy are out still but who knows that still may be possible in the future.

So, never say never, look for ways for your husband to work on things. We've recently bought me a treadmill to hopefully improve my walking speed, stamina and fitness, and I'd love a resistance pool in the garden so I can swim every day without having to deal with the stresses and anxieties of public transport, but that'll probably never happen.

I know it's hard but patience and a daily diary will help identify how far you've come.

Love and hugs Janet xxxx

[sospan]

I know from my own experiences the vagueness from the specialists can be so frustrating. Also the lack of a clear recovery or care path. Over the last 2 and half years I have more or less had to manage my own recovery by myself and family doing lots of research.

I accept that no two injuries are the same but in this country compared to some we treat head injury like a politician giving a statement to the press - don't say anything that you can be held accountable for rather than giving firm direction.

[celtic27465]

Sorry to hear of your Sah as I had one last February I felt totally useless when I came out of hospital don't get me wrong I had some help from family but found health unlocked a font of knowledge to help you deal with your Sah ! They are a great source of help at a time you are most needy of advice ! I do hope you get better soon but take it a step at a time !

[Flumptious]

I agree with Kirk, no-one can say.

I don't know how png I was in a coma for, but it was a while. I was in hospital for 8 months,and I am still 'blind' (officially, anyway). but I was able to go back to my job as a university lecturer. I had 18 months off, and I'd have thought they university could have said "Bye-bye!", but they didn't. So, yes, it can come back. It is worth hoping for, and aiming towards, but I am afraid it doesn't always do that. I hope it does it does, for your husband.

[Hidden]

I WOULD SUGGEST YOU WATCH A DOCUMENTARY CALLED "THE CRASH REEL". IT'S ABOUT A SNOWBOARDER, KEVIN PEARCE, WHO HAD A LIFE THREATENING TBI. IT'S SHOWS WHAT HE & HIS FAMILY WENT THROUGH DURING HIS RECOVERY & REHAB. WHILST WE KNOW THAT NO 2 BI ARE THE SAME I FOUND THIS A GREAT HELP JUST TO SEE WHAT KIND OF THINGS COULD HAPPEN. IT'S OUT ON DVD & YOUTUBE. PLUS, I THINK YOU CAN WATCH IT ON HIS WEBSITE CALLED LOVEYOURBRAIN.COM BEST OF LUCK.

[gj124]

I had my SAH just coming up to 2 years ago but for various reasons I have only been home since end of last Oct. It only became real for me once I got home. Upuntil then it all felt like a dream.

Now I would say I am back to full mental capacity. My memory is not quite back to normal but I use a diary now all the time and that helps loads by taking the pressure off.

I can no longer walk but I am basically still me just in a wheelchair.

[Tortie14]

Hi I empathise - first came across this frustration with medical vagueness when my mother had a big stroke. Eventually we had a great doctor in ICU who was able to be direct and honest - he said - we can't tell you because we don't know. That helped. And since I had my head injury in the autumn I've discovered first hand the same fog of vagueness - and in fact with head injury seems to be ignorance from GP, physios, counsellors etc. I am lucky to know two good neuro physios who first encouraged me to seek diagnosis from neurologist and now I am moving through the tests etc. This site is a godsend and Headway helpline nurse was great. Come here anytime for support, advice and understanding. I am grateful for the relief when I share something here with people who understand (instead of family and friends who just can't get it at all) and I feel less alone. All the best, sending good thoughts your way Stephanie.

[cat3]

Yes Stephanie the 'early days' comment is infuriating I know, but it's something we all have to reconcile with eventually because the passage of time is our best/only friend. It's 2 &1/2 yrs now since my SAH and I would say my cognitive ability was back to normal within 6 months. However I, and many others, are left with poor short term memory, fatigue and other issues which we learn to live with.

But, with the complication of a re-bleed and hydrocephalus, your man's recovery will obviously be delayed somewhat. Remember though that he is continuously healing right before your eyes and will continue to do so for a couple more years at least.

My loved ones were (apparently) close to pulling their hair out with the frustration of getting no answers in the beginning, but once the consultant neurosurgeon sat down with them and explained that there is simply no way of forming a prognosis for any head injury, as there are just too many variables, they accepted it as a waiting game and adopted an altogether calmer mind-set. So, for every case, the answer has to be, "We honestly do not know."

I hope you can resign yourself to a realistic level of acceptance Stephanie because your present state of frustration and anxiety isn't sustainable for the long haul and you do need to pay as much attention to your own state of health as to your husband's in preparation for the eventual support he will be needing to reach his fullest potential.

All best wishes to both of you, Cat x

[gr33nmind]

Stephanie, I had a subarachnoid hemorrhage along wt hypothermia and lengthy hypoxia 20 years. Brain injury never goes away, but despite my attention, memory, & problem solving difficulties, I still feel and think the same. No one knows for certain what the outcome will be, and that is why they are being so vague. Still even though brain injuries never completely heal, one good thing is that they never stop healing. As time goes on the healing will occur slower, but it never stops happening.

[StephanieCB]

Thank you everyone for responding, I do feel very supported here xx