rince

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

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

I've been meaning to put this on here, but I couldn't think of how to phrase the subject line. The basic story is that a fit woman woman of 41 passed away from a brain haemorrhage and they kept her body "alive" to enable her child to be born. http://news.bbc.co.uk/1/hi/health/7824462.stm Scott

What I'll do is draw up some sort of small scale document that runs through the basics. Want I think I want to happen is for everyone to comment, change and update what I've put. But keep in mind this has to be accessible and not go on for page after page in order for it to have the maximum impact. Can people suggest headings for topics? I can think of things that are personal to everyone like "What I have" where you ask your Neurologist to say what sort of SAH you have and where, along with the treatment and what has been left in your body (coils, clips and what type etc) . Next would be what treatments can I safely have? This for the basic scans MRI etc and whether or not you are able to have them. Then we would move on to the more general aspects of SAH, things like the flu jab and the DVLA stuff. As well as anything else that you all think is relevant. Cheers Scott

Hi all, Thank you all for your replies, they've blown me away and I believe most of us have a story that makes it even more clear that we need to do something about the health professionals approach to us post SAH. Cheers Scott

As some of you might know one of the things that bug me is the lack of consistency in not only the care we receive but the advice as well. It seems that if you poll 15 medical professionals about anything in the ongoing life that we can expect to live you'll receive not only different opinions but radically and diametrically opposed ones as well. From something as simple as whether or not you are "entitled" to receive a flu jab to something very complicated as whether or not you can have an MRI scan it doesn't seem to matter what the topic the diversity is quite staggering. I believe that we as a "group" need to make our voices heard to those who are giving the advice. Whether that be via the NHS or direct contact with EVERY Trust and Health Authority, something needs to be done. What I want to see is a simple list of advice being given to every one who needs it, the Wessex Neurological Centre in Southampton has produced a very good guide and that's a good starting point in my opinion. I think that not only the people who've undergone the trauma of SAH and their close relatives need to hear what really happens post hospital release but the GPs as well. Neurologists it seems are not the sort of doctor to be readily approachable by either you and I but by our GPs, the lack of information flow in some cases is quite scary. I know I've been "lucky" in not only the diagnosis by the treatment and aftercare but even I've had some really silly things happen to me! I was refused by my local MRI unit because they "know that people who have been coiled can not have MRI scans"! I had to get my consultant to sign a waiver!! That staggers me that I may not of been the first person to be refused, you can't have a policy like that without refusing to treat people who need it. There is a huge amount of ignorance out there and if we don't try and correct it who will? I don't know exactly what steps to take next but I'm sure someone out there will. Thanks for reading. Scott

Again complete lack of consistency about what is or isn't needed post SAH. From personal experience I would recommend anyone who has had their immune system take a battering (as in a sudden period of ill health!) argue with their GP to get given the flu jab. Scott

Next winter speak to your GP about the flu jab, although I'm bed ridden at the moment with man flu I'm sure that it would of been far worse without the jab! Scott

You'd really have to ask the "carers" about the change in us, although as we've all been through a profoundly life changing experience it would be stranger if we hadn't changed in some way. I am quicker to anger but less likely to worry about the bigger picture than before, small things matter more because I think I can control those in a way I can't control things like the SAH. Those around me tell me I have changed but no one can tell me how that manifests itself. We have the added burden of possible "brain damage" to carry around with us, no one can tell us how it will affect us personally because not enough is known about the long term outcomes about a condition that used to kill the majority of people who suffered it. Now medical science has moved on the difference between clipping and coiling is a grey area in terms of psychological outcomes. Even as surgery had/has progressed in the 10/15 years before coiling became available to mean that the balance of "survivability" was tipped in our favour the focus was/is on getting us physically "better". I would like to think that now is the time for a large scale study on the mental health aspects for those who have gone through SAH and the need not only to treat but to inform the patient of the possible outcomes. When I came home my GP told me that he was told to give me anti-depressants which he didn't feel I needed. How many of you are on similar medication? Why? What type of pill did your GP give you on release from hospital? I was extremely fortunate that my post hospital support was top notch with an OT, Neuro-Physio, Neuro-Psyc, and access to HeadWay. Only then did my family begin to find out what "problems" I was left with, how many out there are left with problems they know nothing about? I have no sense of taste or smell, something that we didn't know about until three months post release, wasn't even discussed but has profoundly affected my life. Other areas like memory were well explained and coping methods put in place. My point is there is no "standard" routine set up for us once we come out of the cloistered establishment that hospitals are. Everyone is different and no two recoveries are the same is what we all hear, but as we all know there are LOTS of similarities in us all and there should be something to ease the change back into normality. I know I've rambled off topic, but the sense of not being the same person is something that 90% of us suffer from so it should be addressed by the medical health professionals. Scott

I have been told by others that post lumbar puncture it's quite normal to have a severe headache, and also that a couple of cups of coffee are an equally common treatment! Medical advice should always be sought, but as we all know that advice does seem to vary wildly. Only on the basics do Doctors seem to agree anything. Beyond the normal does seem to be very much a "matter of opinion". One of the main problems I had post SAH was the hugely different "facts" about it that I was given, my GP admitted he didn't know anything about post SAH treatment but that he would learn with me. That was the best thing he could of said, if he had gone the other way and tried to bluff it I wouldn't have one tenth of the amount of respect that I do for him. On something as simple as post shunt living we shouldn't have to be asking about what we can and can't do, we should of been given chapter and verse about it before and after the operation. There are various places you can look for advice, but like everything else the information tends to focus on the extremes. There is a lot out there about shunt failures and how having a shunt needn't be a huge burden BUT there is very little about living day to day with one. It may be boring but I'd much rather read how to cope and what to do rather than having the shunt blockage symptoms rammed down my throat. I'm rambling on again (not a lot to do with my shunt, something to do with the hydrocephalus!) so I'll leave it there. Scott

All I can say is that I have felt far less dizzy since I stopped caffeine intake. Medical advice can vary not only from Doctor to Doctor but from day to day, what I like about this site in particular is that we can give first person experience of many different issues. Scott

It also has an effect on the amount of CSF (Cerebrospinal fluid) produced as well, which is why it's a no no for those with a shunt. We can take stimulation of the brain but not over production of that! Scott

I wasn't told anything in hospital (that I can remember) but I spoke to someone who has a shunt in and they were surprised I was still on caffeine. I have noticed an improvement in my symptoms since I came off it so there might be something in it. Scott

I've had mine in for five years now and touch wood I've had no problems. I have found that by avoiding caffeine I've reduced how dizzy I feel as well! Scott

Headaches are not an indicator of an aneurysm, when we were looking for reasons why etc we had a long talk with my Neurologist and he pointed out that there were other symptoms that would accompany any pain that one would cause. Headaches can be caused by a myriad of things, the worry and grief caused by your brother's sudden passing being among them. The odds of you having an aneurysm are long, the odds can be shortened by two or more immediate family members having suffered from one AND your family having a history of polycystic kidney or marfans. So the odds are very long against you having an aneurysm in your brain! Even if you do have one you've got to look at the odds of it bursting, again long odds on that! There is a reason why there are so few of us around you know! Each one of us is the result of being on the wrong end of almost lottery winning odds. Those of us with children have probably spent long nights wondering about how the odds are stacked for them, we all have learnt to live with that. I'm sorry that your brother passed away but you have to move on, talk to those close to you about how you feel. Life is way too short for worrying about something that you have no control over. Scott

The reason that you have felt that you're going backwards maybe because you've tried to do too much! Try doing less, far less and gradually build up (possibly over a period of years rather than weeks). Hope you begin to see some improvement soon! Scott

You're at the low ebb now, things can get better. You've found a place here where people will understand exactly what you are going through, if you're up to it read through the forums and find the wealth of experience of SAH and the after effects of it. Life will begin to get better but there is no miracle cure for how you feel just see the people that have come through the other side and think that you will come through as well. Scott

My short term memory is shot to pieces as well, the various coping strategies that I have in place are beginning to fail me as well. Like most of you I have to take medication and I often find myself wondering if I have taken it! I am now five years post SAH but I wouldn't say that it is worse now than in the early years (or to put it more accurately my wife wouldn't!). Scott

Like Keith my children were young when my SAH occurred. I still think that the effect on them has been far greater than has been acknowledged by anyone to date. There are people within my family that like your children seem only to relate what happened to me in terms that have them at the centre. Scott

It was Tania Rosie.

I think you met her when you came to B'stoke and we all got together Karen. Scott

I don't know whether she's still got "floaters" but previously to her telling me it was "better" it quite severely affected her sight. I'll email her and ask. Scott

Just under a year.

I was told that it is possible to have "remnants" of the aftermath of the annie left in the eye. In fact I know it's possible because one of my friends suffered quite severely from it, but it did clear up to be almost back to normal. Scott

Good luck, although I'm sure you don't need it! Scott