Hereditary?

[Guest Hannah]

Hi all,

Following on from the experts who tell us about the 6 month rule I found myself thinking about something else a consultant told me a few weeks back. (only recently started replaying the past couple of months)

He said that recent research showed that there could be up to a 10% increased risk of a first degree relative also having an aneurysm...

Now I didn't think to ask questions at the time because it just didn't seem important, but I'm quite interested to hear if anyone knows or has been told anything about this. I had a quick search of the internet which didn't really shed much light although I did find this link:

http://www.clinicalanswers.nhs.uk/index ... stion=3963

Any thoughts? I don't really want to make a fool of myself by going to the docs unecessarily

Hannahx

[Karen]

Hi Hannah,

I was also told that like a lot of medical conditions, there is a small inherited risk factor of aneurysm's if 1st degree relatives have had one.

I've discussed this with my children, especially as their Granny (my mother in-law) also had an aneurysm coiled.......so there's a risk factor on both sides of the family.

I'm not sure about the screening though, especially if an aneurysm was found, but it was considered too small to do anything about. As far as I'm aware, only aneurysms over a certain size are coiled or clipped. Once you've been given that information, it would be like having a ticking time bomb in your head and you would be worried about every headache that you had. It's quite hard to know what to do ..... advantages and disadvantages to both sides of the coin.

It's a good subject topic though Hannah and one where I think that you would have to weigh up all of the options. However, if you suffer from a lot of headaches/migraines/vision problems, it would probably be beneficial to be screened. It's a hard one!!

Love K x

[rince]

Ok, now as far as I am aware there is only an elevated risk if two or more 1st degree relatives have suffered from SAH. There some genetic conditions like polycystic kidney disease and Marfan syndrome which increase the level of risk. 1st degree relatives are not cousins, aunts & uncles or even grand parents only really brother, sister, mother and father. There is also an inherent risk in screening and treatment of unruptured potential haemorraghes. Also the greater the number of aneurysms the greater the potential risk of it being passed on to or from a 1st degree relative.

We went through this as I have two young children, and even with the highest elevated risk factor within the link you posted the chances of them having a SAH are still smaller than many other life threatening conditions. Worry, fear and stress will more than likely be more dangerous to people than the actual risk of suffering SAH.

During a support group I attended on this subject a woman was convinced that she was at a raised risk because her mother had an aneurysm (burst blood vessel in the eye) and her husband had suffered a SAH. Nothing anything the experts could do could convince her otherwise. Ignorance is dangerous, but ignorance combined with the scary facts behind SAH is an explosive mix.

Remember that for every "fact" you uncover via google someone else will find the opposite on yahoo. SAH is scary enough without the internet, although we probably have all gone and searched and found out things we wish we hadn't. Clinical reports have to be seen in context, and the facts behind the research are almost as important as the data uncovered.

Still on a bright note...... errrr well I'll come back when I've recovered my sense of perspective. Too much negativity is way too bad for all of us.

Cheers

Scott

[Skippy]

Hey there

I'm with Scott on this one. I was told that unless one of my parents or brother had suffered this then this is not hereditary. One of the causes of death for my Great Grandma was a ruptured aortic anuerysm - but she was in her 90s had had 10 children and grew up in poverty but no other members of the family have ever suffered from this. My grandad was one of 10 children - my dad one of four and I am one of two. I was reassured by the specialist that this isn't predominantly an hereditary disease - its an cruel twist of nature.

Don't worry Hannah, like Scott said worrying just enflames the situation and in turn causes stress and distress. I've learnt, even as a sufferer, that there is no point in worrying about things you have no control over cos worrying won't stop them happening. And in your case I'd say that you have as much change of an SAH as my daughter does and I am not worried at all that she will suffer one - remember you are a mixture of your mother and your father.

Stay strong and positive and I promise it will get easier to cope with the more you have adjusted to what has happened.

Take care

Sami xxx

[Louise]

Well, I dont know off anyone in my family that's had an SAH I'm the first, I just like to be that little different away from the norm that's me..

You are a mine full of information Scott & words that I dont know polycystic kidney disease and Marfan syndrome!!!

I'm kind of glad that I'm not into finding out too much of what happened

Take care

Louise.x

[rince]

I've always been a little errr nosey, and a lot of people on here will tell you that the people who know most outside of a Neuro specialist are those who've either been through it or had someone close go through it.

A lot of people who earn their living in the medical world know nothing about the ins and outs of SAH, and my GP once said to me that his knowledge was a very thin cover on nothing. He has to know a little about everything, a specialist has to know everthing about a very limited area.

I hope your Mum keeps on recovering, there will be times when it will seem that nothing has improved but while there's life there's hope.

Scott

[Karen]

Hi,

Re: "We went through this as I have two young children, and even with the highest elevated risk factor within the link you posted the chances of them having a SAH are still smaller than many other life threatening conditions. Worry, fear and stress will more than likely be more dangerous to people than the actual risk of suffering SAH." (Sorry my laptop is doing a funny and isn't letting me quote from Scott!)

Scott, I'm totally with you......I think that the worry post SAH is probably worse than any of the physical stuff that I've had to deal with. If I'd known that the "ticking time bomb" was in my head, I don't think that I would have done anything with my life.......even giving birth.....what a waste that would have been.

Love K x

[rince]

Hi Karen,

You can't quote from me because I haven't received the royalty cheque yet!

Worry, stress and depression are all things that we are more likely to suffer from. One doctor reading from a book wanted to put me on anti-depressents because it was a common factor in early recovery from SAH according to whatever he was reading. I turned the drugs down, I try and keep a positive outlook but sometimes it's more difficult than most. We both suffer from dizzyness and that is what REALLY bugs me, I know I'm never going to be the same physically as before and mentally as well. I've accepted my limitations but still try to keep pushing the barriers. BUT when I'm going through a spell of dizzyness that can last days it is very difficult to accept.

The after affects are so varied from SAH, after all we have suffered an insult to the most complicated organ there is. Giving advice is really difficult because there is no specific answer to a lot of questions. The best we can do is offer a wide range of personal experience and lots of support.

Scott

[Louise]

Hey Scott

You put what I'm thinking brilliant.

Yes we all have such a WIDE range of personal experiences for me its tiredness & bad memory amongst the many that gets me down sometimes & when that happens the tube that I have in my brain empty's Ugh! that really gets me down.

We all have come so far & we all have one thing in common it biggest hurdle of all we've survived.

Hope everyone is keeping warm, its been raining all day AGAIN at least the winds died down for now, that plays havoc with the head dull days oops moaning again - sorry.

Louise.x

[Karen]

Hi Scott,

So that's why my laptop is playing up! No Royalty Cheque eh!!

My thoughts are the same as yours..............ooh what a wise man!

The dizzy spells are probably the worst thing to contend with.......I can spend about a max of 10 mins in a shop before my head starts to kick off and it just makes me want to do a runner. If I didn't have to put up with that, then life would seem okay, but it can be pretty debilitating and it does make you feel depressed, no doubt about it. I think that you're the only person that I know, who suffers with the same.

Love K x

[Guest Hannah]

Hi all, thanks for all the comments and info. Strangely wasn't worried, more asked it out of curiosity.

Scott - I know what you mean about the internet, but I have to say that without it I would have been completely lost in terms of understanding what was going on and knowing what questions to ask. The first hospital was good but there was just too much info to take in. The second hospital ...well not so good would be putting it mildly.

Update on my mum - still doing OK this week still thinks she is in Germany (we lived trhere for abou 5 years - 15 years ago) It may be my imagination but her memory has shown signs of improvement. Had the OT out to check the house today and she confirmed that she is definitely allowed home for 6 hours everyday over Christmas. Regarding walking, I saw her what can only be described as charging, across the neuro gym today with the physios attached to each limb.

I told her about this site which she is keen to look at, in the mean time she asked me to ask you if anyone had suffered from incontinence whilst recovering from a stroke....and to ask how bloo*y long does it last for! (her words not mine)

Hope everyone is well today

Hannahx

[Louise]

Hi Hannah

It’s probably not your imagination your Mum will be showing signs of improvement all the time some you’ll notice some you’ll maybe not.

I was meant to have a home visit that was when the OT came along to see how I would cope at home, I was worried because we’d got a new kitchen fitted when I had the SAH it worried me that I wouldn’t know where anything was & they wouldn’t let me out, they did it was ok. I got out from Xmas eve till the 6 Jan it was brilliant I certainly can say that being home helped me, to see things you recognize it was great therapy & a little scary too.

Incontinence Mmm well I had a catheter for a while when they took that out I used to have to go to the loo a lot the trick is remembering to go to the loo!!!

How long well as I improved so did it.

Hope all goes well on the outings it will be great & have a lovely Christmas.

Take care

Louise.x

[Karen]

Hi Hannah,

Great news about your Mum, she sounds as though she's doing well!

I would imagine that knowing that she can come out of hospital during the xmas period will be a great boost to her spirit and spur her on.

The incontinence issue, well I suffered incontinence only due to seizures at the start of my SAH, but thankfully after the catheter was removed I seemed to be okay......but I was extremely worried about it. Like Louise, I had to pay frequent trips to the loo....not sure whether it was physical or more in my head, after being told that I had been incontinent.....as I couldn't remember.....which was scary in itself. I've heard that incontinence is fairly common after a stroke. As to whether it will go or not, I haven't any info....it might be worth posting on the Different Strokes site.

Hope that xmas is a very happy one for you all....love to your Mum and yourself, Hannah.

Love K x

[Lauren]

Even if there was a high risk of me having an aneurysm, I don't think I would ask to be screened, unless it was necessary.

I know all the symptoms of SAH and am well informed about it. SAH is like a bomb, and knowing I had an aneurysm wouldn't determine my outcome or survival rate if I were to have one.