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Recovery Period


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Hi All

I continue to be amazed as to recovery times. I purchased Lesley Foulkes booklet on Subarachnoid Haemorrhage and on the subject of recovery it states " Recovery will take a minimum of several weeks and for many, several months", it goes onto say at least 3 months to return to previous levels of activity. I feel a bit of a fraud as it is exactly 3 YEARS to the day since my embolization and am in no way recovered. It gives people the wrong impression when they read this or similar which gives rise to comments "Come on you should be better now now its been 3 years!!), if only it was true. I can see from many on this website that recovery is of a much longer duration. If you tell people how you feel you are classed as a "moaner" and I said previously programmes like Emmerdale don't help.

I found Lesley Foulkes booklet very helpful as I was told very little on being discharged from hospital but I think the "recovery period" is open to dispute.

Cheers

John

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Hi John

I totally agree with you - although when I left hospital I wasn't given any information on my recovery either in terms of length or what to expect.

I think it has to do with how physically fit you are in the first place, your mind set and whether or not you had any complications. Luckily, for me, there were no complications and I've made a pretty good recovery. Hubby reckons it's cos I'm stuboorn - how rude!! :lol:

Recovery, as we all know, is very much an individual thing and can vary greatly.

TTFN

Sami xxx

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Hi John

I, or should I say my wife was given that excellent booklet whilst I was in hospital as Lesley Foulkes was one of the nurses involved in my care. I did try to read some of it whilst I was in hospital, but it was swiftly confiscated and given back to my wife :lol:

I found this and was amazed at the conclusions:

Patients surviving subarachnoid haemorrhage without neurological symptoms have a good prognosis and should be encouraged to return to a normal lifestyle within about three months.

http://www.pubmedcentral.nih.gov/articl ... id=1837314

The full text of the article can be read by clicking on the pdf link

Regards

Keith

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Hi All :D

3 months!!! I wish.......i was lucky that Yasmin had a copy of the booklet and gave it to me to read .....and i have to say it was very helpful....but agree the recovery time stated is definitely open to dispute.

Take care

Love Tinaxx

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Don't feel a fraud for being on the wrong end of the recovery spectrum. I'm almost six years post SAH and am in no way the person I was before. A good recovery for a medical professional is completely different to what you would expect, ditto "normal". I am considered to be a "good" recovery leading a "normal" life and let me assure you that compared to my previous lifestyle it is far from being either.

That's not to say I don't enjoy my life, because I do! For every down side there is an up side.

Scott

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Hmm, but are the medics talking about people that have had a very small bleed, no surgery needed and without experiencing any physical/mental deficits ..... and the term "good prognosis" ...... well, perhaps that means "surviving" the bleed and not dying or not needing round the clock care and being as independent as possible ...... who knows? .... or does it mean that we should all be back to work by 3 months and carrying on in the same capacity as we did before the bleed?

As Scott has said, I don't think that any of us should worry at what end of the recovery spectrum that we're at ...... what the medics term as a "good prognosis/recovery" is probably a lot different to how we view and interpret those words .....

I am no where back to my pre-SAH days ....... but if I asked my GP at my appointment this afternoon, whether he thought that I have made a good recovery, he would probably say "yes" ...... if I remember, I'll ask!

Hope that all makes sense!

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WELL I HAVE TO AGREE WITH EVERYONE YOU HAVE TO WONDER WHERE THEY ARE GETTING THIS TIME FRME FROM. I WAS SENT HOME WITH A PAPER TELLING ME WARNING SIGNS ON THE INCISION OF A CLIPPED SAH, (AND I WAS COILED) ALONG WITH A WHOLE LOT OF PERSCIRTIONS. OTHER THAN THAT JUST FEAR.

THIS IS WERE WE THROW ARE HEADS BACK AND LAUGH AT THE SILLY PERSON :lol:

HONESTLY WERE DO THEY GET THIS STUFF EVELYN

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There was a common theory around the time I had my annie that you could tell what sort of recovery you were going to make by looking at 3 months post and 6 months post with ALL the major recovery occurring in the first year. Thankfully you don't seem to hear that as much these days. What we've all learnt is that different people recover in different ways, but there are enough similarities to be able to give people an idea of what to expect.

Part of the problem in my opinion is the difference in the medical meaning of phrases and the everyday meaning.

Scott

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Guest Beth1957
Hi John

<snip>

Patients surviving subarachnoid haemorrhage without neurological symptoms have a good prognosis and should be encouraged to return to a normal lifestyle within about three months.

<snip>

Regards

Keith

Hmm I suppose the key words are "without neurological symptoms" - and yes, I can imagine that anyone who manages to have an SAH without those might well recover swiftly! But, for goodness sake, how many SAH sufferers have no neurological symptoms??!! I've got 'em (mildly) with an unruptured annie for heaven's sake...

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My husband spoke to a neurosugeon in Frankfurt back in March 2008 when I had the SAH, he pointed out that it can take up to 2 years with some people depending on the severity of the bleed.

He also pointed out that even when recovery is made there will be some medical problems left with the patient, off course depending on patients history.

He said that younger people tend to recover far more quickly than the mature patients.

May we all continue with our recoveries.

Myra xx

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Hi all,

I had this problem with no books or advice. When i went to the doc, he said that I should be fit and recovered and back to work in 3 months....this where my problems started! I returned to work after 3 months on a phased return and then didn't last every long before I was off for five months! I am now just over 2 years and still don't feel as I was, my doctor has now made me accept that I probably won't ever bounce round ike I used too. Tiredness, emotions and nerve pain are still my worst enemies!!

Still we carry on along the road to recovery

Love and hugs

Laura

xx

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I WAS SENT HOME WITH A PAPER TELLING ME WARNING SIGNS ON THE INCISION OF A CLIPPED SAH (previous quote)

Wow, that´s much more than I went home with...... :)

3 months to get "back to normal"? What is "normal"? If it means to be able to walk, talk, eat and do other things on my own, then, yes, I am "normal". I can also think, work, drive, read and do some physical things though not for too long. People say I look "great". On the outside, I suppose I seem more or less "normal". Yes. My neck is still stiff and I have got a frozen shoulder though it doesn´t show that much. But I do see the world through different eyes now. My physiotherapist tries to unglue my neck and shoulder 3 times a week and, apparently, I am one of the crown jewels of my neurosurgeon. I rang up his office yesterday to ask his secretary about my clip regarding my scheduled magnetic resonance and to my surprise, he picked up the phone himself. He didn´t seem to remember me at all until I mentioned the length of my operation and then he knew who I was. He said with a renewed tone of voice that he remembered the operation clearly though not my face. He sounded incredibly stressed and tired. I believe he is. But that´s the man I owe my life to and he will be always special. By the way, Yasargil clips are compatible with magnetic resonances.

I am very grateful and I enjoy life to the best of my ability. I have been very lucky and I am also very stubborn and want to live the best I can. When I have a bad day, I try to cut it short and go to bed early. I more or less manage to carry on with life where I left it (and appear "normal") but emotionally I am a totally different person and I will not pretend otherwise. The person I was is gone and I cannot dwell on that. I believe the change to be more internal than what it shows on the outside. I sometimes grieve her loss but that is also part of my personal recovery process and it´s necessary for me to do it. I consider it part of the healing. There´s much more to all this for me than just the physical side and nobody can put a deadline on how long I need to come to terms with and adapt to the new situation. That only adds unnecessary pressure. I agree that it is a very personal issue.

The best to all of you with your individual recoveries...

Lots of love,

Nurianna

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Yes I was told in the hospital after my coiling that it would take me 3 months to recover and get back to work. A couple of weeks later when I started attending the rehab hospital they had a much more realistic view of things and said that I had quite a big bleed and it would take at least a year to get my strength back and I could expect to keep on improving for another year or more after that. Maybe the neurologists who treat people in general hospitals aren't so clued up about the recovery of patients.

I have a scar on my arm from where the drip was put in when I had the SAH and I can still see the scar 14 months on though it's still continuing to fade so hopefully the healing is still happening inside.

Anne

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Hi everyone I am sure someone sits down bored and makes it all up on recovery times and things my view is if they ain't been there they don't know, yes I could walk and talk within two weeks of my bleed but mentally it took alot longer I was so afraid it would happen again, every little twinge your panicking they can't tell people when they have recovered cause they aren't in our heads.

And work I would love to see how long they had off if it happened to them :lol: (not that I want it to happen to them) :lol:

Right I am going now. Jess.xxx

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Guest sarah c

Hello Everyone,

It will be 8 years since my SAH on Friday the 16th January, I agree with everyone else, it is certainley alot longer than 3 months for recovery. To be honest I think after you have been through something that intense in your brain you never fully recover, the tiredness factor is still a very big issue for me. Talking about scars I have a scar just above my knee from that day, I donot know how I got it but you can still see where it is, so if that is still there after 8 years on I really donot see that my brain has fully recovered. God Bless Everyone Sarahxxxx

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Hi Sarah,

I know where you're coming from ...... I'm 4 years post SAH in July this year ...... and it takes a good couple of years to accept what's happened to you and adjust..... I'm still adjusting, mind and body .....

I can remember reading on another forum..... when I was about 6 months into recovery ...... somebody saying, that they were still having problems with fatigue when they were 6 or 9 years on etc (I can't remember the precise amount of time, but it seemed like a huge amount of years to me at that stage) and I thought "that really won't be me" ..... and I didn't feel particularly sympathetic towards that person ..... how wrong I was to think that! ...... Now, I feel quite ashamed of myself, for even feeling like that ..... as I know, that it's a totally different story, to what I was told..... 3 - 6 months recovery.....

I don't think that I will ever forget the date of my SAH ..... when I reach another year, it feels very poignant and probably means more to me than my birthday and I always celebrate it ...... I'm not sure whether you feel that congratulations are in order for Friday or not, it all depends how you view it, but it's good that you take your time out to post and I hope that you can enjoy the day.....

Lots of love, K xx

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Hi All

I'm two and a half years in now, or thereabouts, and still nowhere near the person I was, nor will I ever be. This is probably the hardest thing for me to accept. It's ironic really as I only really began to 'know me' and feel comfortable with myself from the age of 40, then the SAH and now having to start all over again! It's interesting, though, in a lot of ways, and just shows we should never take anything for granted.

I still suffer greatly from fatigue and a myriad other painful symptoms, although I'm undergoing tests for this as the thinking is that it's ME or something similar (rheumatism, auto immune deficiency perhaps) which, whilst not caused by the SAH, it has probably triggered this debilitation.

An interesting fact, and one that gave me great confidence in my GP, was that although my neuro-surgeon (for whom I shall forever be indebted for saving my life) said that recovery time should be the oft-repeated 3 months, my GP was totally honest and said that my life would almost certainly change quite dramatically and that I may not be able to work again and if I did it would certainly not be in the capacity that I had been. Whilst that seems, perhaps to some, defeatist or pessimistic, I found it refreshing that someone was being totally honest (sorry, repeated that phrase now but they're the only words to use!).

So, onwards and upwards and here's to life whatever it may be like now!

Love to all

Sarah xx

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Re recovery, I find that nearly 14 months on, it's not so much the actual SAH event but all the symptoms that it's left. I think if I were symptom-free having the memory of the SAH event would have faded a lot by now. As it is, I'm reminded of it a lot on a daily basis and still trying to make sense of the whole thing.

Worse still, I know I feel I need to comment on my symptoms to people eg I have to brace myself to eat as food has this rotten egg taste and when someone comments that lunch was nice or whatever, I feel obliged to say that I don't know as I can't taste properly. I think I'm turning into a bore and I am sure people must wonder why I'm not "over it" by now. I feel I must try to stop mentioning it. Does anyone else feel like this?

Love

Anne x

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Anne, I was lucky I have no memories of it at all, infact I have not memories of much at all!

I found though I was trying to explaine myself a lot and there were/still are certain people who raise there eyes upwards still but its who I am, its with me 365 - 24/7 I cant just have a time out (much as I'd love that) I explain what happened how it left me, how I am now, I cant help it it part of me......its who I am.....

And I doubt Anne that your turning into a bore....

take care

Louise.xx

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ANNE

I DO UNDERSTAND EXACTLY WHAT YOU MEAN, I FEEL LIKE A BORE ASWELL, GLOOMY AT TIMES, I HAVE TROUBLE TRYING TO FIND THINGS TO TALK ABOUT, AND TRAPPED INSIDE THIS PERSON THAT I DON'T REALLY KNOW ANYMORE. SORRY DID NOT MEAN TO GO ON SO.

LOVE AND HUGS EVELYN

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