How many people go on to have a further SAH?

[Guest libby926]

I had my SAH in July 2005. Like everyone else, it was a terrible shock because up until then I'd been a reasonably healthy person. I was at the end of a cruise and we were due to stay in a hotel for our second week's holiday. Looking back I don't remember much about it at all, just that about a week later I remember waking up in hospital and asking my daughter where I was and what had happened? I still don't remember anything of that week at all, it's completely lost to me. I stayed in a Corfu clinic for three weeks and then they flew me home where I had the coils inserted. I have a residual neck to the aneurysm and also a second aneurysm which is too small to treat. I feel I am living on a tightrope. I am having another MRI in the next couple of months but after that I believe I am going to be discharged if the aneurysm hasn't grown in size. I am not normally a nervous or self-obssessed person but this SAH has really changed that. I feel every day as though I am living on a knife-edge. Frankly, I'm scared that this second aneurysm could rupture and that next time I might not be so lucky. Do I have the right to insist on annual MRIs? My consultant has offered to clip the aneurysm but I've looked into the side-effects of that and I don't think it's something I want to do since I believe epilepsy is quite common afterwards. Oh dear, I feel like such a wuss although I feel I've made a very good recovery. It's just this feeling of uncertainty I guess. This is a great website and it's good to be able to share thoughts and feelings with others in similar situations. Libby xx

[jess]

Hi Libby have the clip that is my advice I would rather than being discharged and left with that in my head, I have had to clippings done sept 02 on rupture one jan 03 on aneurysm second one I was pregnant 2wks later with my first child who is now nearly 5 and I have a 9 month old. I am sitting my driving test next month and I work, I was well say a month and a half after first clip 2wks after second one everyone is different it is your choice but I would have the clip, Goodluck with whatever you decide to do. Jess.xxx

[Shanti]

Hi Libby

I did post you a long reply a few days ago, but it seems to have mysteriously disappeared.

Oh well. I'll try again...

I too have a smaller aneurysm which I've now been informed by my neuro surgeon is only 2mm (they only operate if they are 5mm or larger at Hope Hospital or obviously if they've ruptured and are bleeding). And that as its on the middle cerebral artery and would have to be clipped it would be more dangerous at this stage to intervene surgically than leave it and monitor it.

(In your case of course your surgeon has offered to clip yours. So perhaps I would go for it if it was offered. I think it would depend on where the aneurysm was situated and whether or not the neuro surgeon said it would be more dangerous to operate than to leave it alone and monitor it as in my case.)

I subsequently went off to query this with my GP. He pointed out that most aneurysms are congenital, meaning you were born with them, and usually they only burst in middle age in most people. He said post SAH most of us make and stick to healthier lifestyle choices and our blood pressure is better monitored and in the first couple of years hopefully we will be given MRI scans just to make sure, so the chances are slim of a second smaller aneurysm growing and bursting.

I have been reading Jane Lapotiere's Time Out of Mind (Karen kindly forwarded it to me) and on page 206 she states that her neurosurgeon told her re second smaller aneurysms 'you're less of a risk than people walking around who don't know what's going on inside their heads. Only twenty per cent of the half a per cent of people who have second aneurysms have them burst. Karen: is it okay to quote from a book on here - edit it if not - thanks.

I stopped worrying completely at that point. After all I've probably had the aneurysms since birth (I'm now 61) so the chances are that the second one won't have sufficient time to develop in the time I've got left (15 to 30 years if I'm lucky) to become too dangerous (also of course I know the symptoms now of a pre SAH (could any of us ever forget!) and would immediately SHOUT for HELP so the situation may not be so dire as the first time).

Hope this helps

Big hug

Lesley xxx

[Karen]

Hi Lesley,

A v.good reply.......yes, it's fine to quote from Jane Lapotaire's book .... I'm sure that she would be fine with it, as I would imagine that she would like to think that her own experience of SAH would be of help and of comfort to others ... I would definetly recommend anybody to read this type of book, it kind of puts life into perspective..... well, it did for me....

I must admit, that if I require future surgery to the neck of my annie (I'll know in 2010), I would take the risk, rather than live with it .... I would imagine that the Docs have to point out the worse case scenario etc pre-op, just in case anybody decides to sue etc ....and with any op, even simple ones, there is a risk, even with the general anaesthetic .... it's an individual choice, but having lived for nearly 3 years with "you may have had a bleed on the brain" and then to go on and have this SAH, I know that for me, I would have to get it sorted, as if I had a re-bleed I would really doubt that I would survive it or would come off with even worse disabilities and I don't know if I'm brave enough to be able to live with any more than I've experienced from this SAH ... but who knows! It also helps to know that my kids are older and now able to fend for themselves, as perhaps I wouldn't be quite so definite with my views.....we all have personal circumstances that also need to be addressed before we can make that decision....it's a hard one!