rince

I was on 40 a day when I had my SAH, I also had a couple of other risk factors (stress and high BP). Fortunately for me I was unconscious through the physical withdrawal and seemed to of forgotten what it was like to smoke (if you see what I mean). I had tried on many many many occasions to give up but to no real effect, even at one stage taking up cigars but I went from 5 cigars a day to 20+ !!! I have total sympathy with anyone trying to give up this dirty disgusting habit, I was one of the anti smoking smokers even before my SAH. My condition has been the main reason why I haven't relapsed in that I have no sense of taste or smell, so I am not tempted by getting a whiff of someone else's ciggie.

Scott

If you had a clip then the need for scanning is even less! Hope you are feeling better now.

Scott

If you had coiling then that frequency of scans is normal. Over here it's supposed to be one year, three year and then five year I believe. If any issues are noticed then the scans will be more frequent.

Scott

Hi all,

I've been "invited" to take part in Biobank.....

"...studying the prevention and treatment of cancer, heart attacks, strokes, diabetes, dementia, joint problems and many other serious diseases..."

It seems there is a 90min assessment and medical to be accepted onto the program.

Has anyone else been to one of these? Or does anyone know anything about the "Biobank Project"?

Scott

I'm in the UK and our very own government agency when they gave me back my license to drive they took away permanently my HGV license. But my case isn't a straight forward SAH recovery as I had SAH, stroke and hydrocephalus. I think I could apply to get the larger vehicles back onto my license but I can't be bothered as the likelihood of me needing to drive anything large than 3.5 tonnes is negligible.

Scott

I know it's difficult to see beyond the here and now but you have to keep on going. Progress for some of us is/was painfully slow, some days/weeks I didn't think I was making any progress at all. When you look back in a year (or six months) you'll be able to see the huge progress I know you will make. I'm not saying that you will be back at 100% and back to pre SAH state ( I know I'm not) but you will learn to accept the person you will become. Remember that there is truth in that old saying "whatever doesn't kill us makes us stronger" even though you may not be able to see the route now there is a road to "recovery".

Scott

If the neck of the annie is more than what your neurologist considers to be "safe" or if you have an un-ruptured annie then the risks involved with treatment although still not small or insignificant are considerably less than in the aftermath of a SAH. There is a balancing act between either leaving alone or taking action with treatment that in itself may cause serious consequences and that will vary from neurologist to neurologist. Whether or not you have treatment will be down in the end to you, but you have to take into account expert advice. That expert advice should come from your neurologist rather than anywhere else, we may all consider ourselves to be experts but our knowledge does have serious holes (not as bad as you average GP tho!).

The success of coiling has some unexpected consequences as well. As embolisation now accounts for upto 80% of SAH treatment rather than clipping it means that the art of placing a clip has gone into decline. Neuro-Surgeons who gained experience from treating SAH are now sidelined in favour of the seemingly safer route of coiling which is done by a Radiologist, which means that the "easy" way of gaining surgical experience has been taken away from the people who now only have to perform this art on the more "difficult" cases or those in which coiling has failed. Personally I'm glad that I didn't have to have "open brain surgery" but I am half worried about the long term effects of coiling, there may of been issues about certain makes of clips in the 70s/80s but it's never nice to be a guinea pig!

Scott

Hi Donna,

I suffered from, and still do in fact, a weakness down my right hand side. I am always in pain only the degree of the pain changes from time to time. On occasions I find that I can not walk at all. It was three years before they gave me a diagnosis of "Neuro-Pathic Pain", it seems that there is nothing physically wrong with my hip but that doesn't mean that there isn't a problem with it. Whether weakness or pain I do still suffer the after effects of the SAH five years on, but then I am on the fringes of having a "normal" recovery. Many people find that they do suffer from what you describe and gradually over time they subside but it is amazing what you can learn to live with!

Scott

Even five years on I still worry about another bleed, even though I know in my head that it's not going to happen I can't convince my heart of it (if you see what I mean!). You can't have cast iron guarantees in life and you learn to deal with things on the balance of probability and that says that it will NOT happen again even though you feel otherwise. It's no good people telling you what may happen, we all know that is no help at all! What you have to learn to deal with is living in the aftermath of SAH. How you do that is down to YOU there is no right or wrong way just a matter of common sense. Help and support is good, helps with recovery BUT the hard work has to be yours and those closest to you.

I hope that you can look back in a few months time and see the difference, that's one thing we all have in common.... The speed of recovery may not seem much on a day to day or even a week to week. You may only notice slight differences from month to month but as long as you are moving forward that's what is important.

Scott

36

A shunt "alert" card should be carried at all times.

http://www.asbah.org/2-222-995-992.aspx

General info can be found by following the links from the home page.

http://www.asbah.org

A really useful and helpful group.

Scott

Hi I too have been told that my "dizzyness" is down to the great catch all "panic attacks". Strange how its always there, even in non stressed situations! What does thou is just to get by yourself or with the one person you trust (My wife Sarah) and breathe it through. They are fewer and farther between but that doesn't make the "OMG I'm having another one!!!!" any less scary. In fact I'm just bottoming out on one now. Getting the kids out of the way so they don't worry or panic is getting harder tho.

Scott

I've just started work in the commercial office of my local football club, unpaid of course as we struggle to pay the playing staff!! Again very much what I can do when I can do it. Hopefully this is another step back in the direction of paid work.

My one piece of advice is don't try and rush ANYTHING there will always be tomorrow for anything that you can't do today.

The advice I was given was that although many people make a full recovery it could take up to three years. I was also told that there are no guarantees when it comes to ABI (acquired brain injury) and that there was as many different outcomes as there are patients. Exactly what you find on here. To try and with hold that from people is totally arrogant, we know but you can't know... utter tosh. Not everyone is as lucky as I was in that I received top notch care and after care this website is a MUST have as far as I am concerned. There is a lot out there on the web that will scare people in terms of SAH but this site is unique in that it's content is 90% survivor generated.

One of the problems as I was told almost five years ago was that coiling was a fairly recent medical advance so there was no real hard facts about living with it. The long term is now with us and WE are the people best able to tell that story.

Scott

Seems to me that the majority of medical health care "professionals" have their heads if not firmly in the sand then in need of surgery to remove it from another part of their anatomy! From reading the posts on here the support that people get from Karen's hard work is immense and for someone who should know better to try and belittle that is not only wrong but stupid.

Scott

I used to be able to drink quite a lot before becoming "drunk" but now I prefer not to drink at all because I am such a lightweight! Seriously tho I do suffer quite bad hangovers after even a couple of glasses of wine.

When I'm dropping off to sleep I have a major twitch which is a pain because most of the time it wakes me up again!!

Dental work with a shunt used to be covered by antibiotics pre and post treatment, that advice has changed. Now I don't need to have any different treatment because of my shunt. I can't see what good they would be for untreated annies either to be honest.

Scott

It seems there are many thoughts about movement of the coils and movement of the head. It would make perfect sense for the sudden rapid acceleration and deceleration of the head to mean that items of different density to have different speeds of movement, meaning a physical change in location. I have asked and been told that it's OK for us to go on fair ground rides, but I have my doubts!

That links in to the movement of the head and coughing for a prolonged period of time, physically it has to have an effect!

Scott

Just after I had my shunt put in I had the weirdest problem, I was getting feedback on mobile phones! There was a whistling feedback loop that both parties could hear, went for a couple of weeks before it went. Now I'm left with the whistling in my left ear (my shunt is on my right side) which has been there for what seems like forever! (can't now remember a time with out the static instead of silence).

Scott

yep for some reason I always think of him as a "field " rather than as a "fill" Don't know why, do you think I can blame the SAH for it?

Scott

The "coiling" is done by a radiologist rather than a neurosurgeon, so your consultant is not the person who would of put the coils in. She/he is the person in charge of your care and follow up.

I had the same misapprehension and had it explained to me post shunt (which Mr. Duffield did do!).

Scott

Hi Maureen,

I see you're in Alton, does that mean that you are being treated in the Wessex Neuro Centre in Southampton? If so you are right there are a large number of excellent neuro surgeons down there in Southampton. We have a SAH support group down there on the first Thursday of every other month, I still find it helpful (although after four years it has become more social than anything else!).

There were a lot of people there last time, in fact if anyone here has been we filled that seminar room up! You also get the chance to ask rather more technical questions in front of an "expert", last time we had my Consultant Mr. Duffield. Of course there are also the two specialist SAH nurses who do a wonderful job (Sarah and Lesley) .

Scott

Hi Anne,

I too have no sense of smell or taste, but I have to say that it's not been a big issue for me. There are so many things to adapt to that it's been a case of no one single issue being a major problem, more the overall set of circumstances getting me down. If I ever did sit down and isolate every single "deficit" that I have then I probably wouldn't even both getting out of bed!!

It has taken a long time for me to begin to accept the person I am now and look to what I can do rather than focus on what I can't. Easy platitudes I know but I was an angry and over emotional bloke in the first couple of years post SAH (I still am now occasionally ). Slowly I began to accept and be "happy" with both myself and those around me, there may be some pillocks out there but there was no reason for me to act like one as well!

Scott