Subarachnoid Haemorrhage and Genes ...

[Karen]

I've discovered today that at least another two members of my family, have had a SAH or a cerebral haem ... My Aunty is currently in hospital (she told my Dad about the feeling of being hit on the back of the head) and I discovered today, that her brother also passed away due to a bleed on the brain and had described to her, the feeling of being whacked over the back of the head, so she knew what was happening to her.

There is a strong possibility according to my Dad, that another brother also died of the same (a few months after the youngest brother passed away) Their Father, who was my Grandfather, also died from a cerebral haem.

I am convinced that in my case, there is a genetic link to this type of abnormality .... as it's too much of coincidence to have this number of people in my immediate family to have experienced the same.

I would be interested to know, how many of you guy's know of members of your family, that have experienced the same as you have?

Many thanks,

K xxx

[KelBel]

Hi Karen

I never knew my dads mum as she passed away in her early 50's. I found out on Xmas day last year (the day after I came out of hospital) that she had died from a brain haemorrhage... (about 5mins walk from my flat actually...bit freaky) whilst out shopping I believe.

It was sudden and immediately fatal. But I don't know if she had an aneurysm or what caused it.

I am not aware of any other members of my family having had this.

Kel x

[sallym25]

Hi Karen,

I'm not aware of anyone in my family suffering from one. I think I must be just the blacksheep.

[kempse]

There would appear to be a strong link in your family Karen, which could indicate a genetic connection.

My Grandad (my Mum's Dad) died from a subarachnoid heamorrhage - not immediately, but he never came out of hospital, (aged about 79 I think). My Mum only has one sister, who doesn't have any children, and my Dad doesn't have any brothers or sisters, so I have no cousins.

I have two sisters and one brother who obviously aren't aware of any problems. so that basically leaves me with the fault!

I think that's about as much as I can input - interesting, but not easy when family members are not scanned as routine and may live their entire lives with unruptured aneursyms that no one is aware of.

Sarah

[goldfish.girl]

Hi Karen,

thank you for bringing up a genetic link. My auntie (mums sister) was left severely disabled by brain haemorhage (can you believe I STILL haven't remembered how to spell that?!) My bleed was at 38 and maybe my bad living (smoker) brought it on sooner?

As I have 3 aneurysms, I've been told it's probably genetic and I am at risk of developing more. I have two children. 1 consultant says it would be a good idea to test them, the other says definitely not as one child is very young and for the other it may highlight 'more problems than it can cure'? It terrifies me when I look at their beautiful faces to think this killer may be waiting for them. My older child has migraines (as I used to) and I panic when my younger child is unwell and says his head is sore. Half of me thinks they should be looked at and prevention is better than cure, half of me understands that they could have aneurysms that are untreatable and it might be best to live in ignorance?

[winter]

Most of my family have passed on - no annies that I know of. My anneurism was located in an artery, that the neurologist said, is unusually small and therefore, probably congenital. And because of this my 2 children should be checked out. Every time I visit him, he asks if my kids have had their MRAs yet. It really scares me because neither of them have been able to do so. My daughter's insurance company won't pay for it as they don't deem it medically necessary - and so won't pay for it. MRAs are several thousand dollars, which we just don't have My son doesn't have any health insurance at all - not good! So for now, we just don't think about it. And when we do, it's very scary. I keep hoping one of the universities around here will do some studies surrounding genetic links w/SAHs, volunteers welcome!!! Maybe I'll write some letters:shock:

[myratas]

I know that my mother's uncle had 2 brain haemorrhages, the first one he had survived but the second one was fatal.

I am the second person in the family and I do worry about my son's but they don't seem to worry about it at all.

[Anya]

Congenital or genetic? Mine wasn’t diagnosed as a ruptured aneurysm, more a case of a possible congenital defect…like a “bulge on a tyre” that burst and resealed itself. However, my mother’s mother, whom I didn’t meet, died of a sudden stroke aged 52. Although it wasn't confirmed, my suspicion is, it was a brain haemorrhage. It’s always on my mind to request my daughter’s brain be scanned…not sure if this would be offered unless there’s a definite link found, which from reading these posts would seem to indicate. This prompts me to phone the neuro unit in Southampton to ask. Will keep you posted!

[zoe1zoe1zoe1]

Richards nan had a brain heamorrhage. Our 9 year old daughter had an mri a few weeks ago to check whether she has any aneurisms as she has headaches. we get the results next month.

[Gill C]

My Dad had a bad stroke at the age of 58 but i have no idea if it was an SAH, I think his parents died quite young too but no idea what from. I know there are sight problems in the family so maybe there is a congenital weakness in the arteries to the eyes?

[Louise]

As far as I know nobody on my Dad's side & my Mum's I dont know about ~ so not sure really.....

Its interesting tho as they say that its not passed down....

[kim0811]

Hi

My Dad died in March 1998 after having a SAH from an aneurysm. At the time my Mum did mention that she thought an uncle of my Dad's had died of a brain haemorrhage but didn't know if it was due to an aneurysm.

I had my SAH in Oct 2004 and had the aneurysom coiled. I now have a second annie that is being monitored.

Both my Dad and I used to suffer with migraines and I've not had one since my SAH (touchwood). My children haven't been checked for aneurysms, they haven't asked and I haven't raised it with them.

Kim

[JayKay]

No one in my immediate family (thank goodness, touch wood!!) has had a SAH but my grandmother did die of what we called "brain haemorrhage" back then. I don't actually know if it was a clot or a bleed... She was 76.

The doctors told me that my daughter doesn't need screening unless 2 other close members of the family have SAH, so we're just living life to the fullest, thankful that I came out of it ok. I would hate to have her screened and then told there's an aneurysm they want to "watch and wait"! I'd rather not know !!

[Angela]

I have had 2 sah/s, my younger sister had 1- 7mths before me and i have a full cousin who had 1. He was unfortunate to have suffered a stroke after his, and to this day after intensive rehab

is still unable to mobilise and is still in a wheelchair

I spoke with my GP about my concerns with the the amount of family members having suffered these and she got in touch with my neuro consultant about screening family members.

He got back and said he was not in favour of screening as there could be to many things that would need to be considered if anything showed up

He said that that not every anuerysm is treatable ,due to the position and site where it could be,and someone could be left with the knowledge that they have a poss ticking time bomb inside their head.

Also you would need to declare this for insurance purposes, which of course the minute you declare this everything goes through the roof financially

He also said that any screening that he would do would only be for siblings only

Felt quite confused about all this and dont know if i agreed with some of it , but suppose he knows best and have their reasons for it

I have other siblings and they said they would not want screened if giving the chance,they said whats for you wont pass you but i dont agree after whats happened to myself and my other sister

Afraid my motto now is prevention is better than cure

take care

[Karen]

Guy's,

I agree and would not have wanted to have had screening myself. My two children have said the same, as it's difficult to live with the fact that you might have a ticking time bomb in your head!

I think that screening should be offered as par for the course, if anybody is experiencing problems. However, most of us on here, know that an aneurysm under a certain size, won't be operated on, as the op itself can pose more of a risk than the aneurysm rupturing. Would I have wanted to know if I'd had one, that was too small to be operated on or in an area of the brain that was difficult to access? ... then no, I wouldn't have, as I truly believe that it would have given me extreme stress and probably stopped me from the life that I was living.

It's a difficult situation and only one that can personally be made by the individual concerned ... but, I do believe that family medical history should be passed on and people be allowed to make the decision that's right for them.

There's no right or wrong with this situation and it's a hard call to make, as to what people decide to do, but a decision that needs to be carefully thought through before making a choice as to screening and the consequences.

No magic answers from me, but thanks for your feedback and letting me know your family history! xx

[Liz D]

Hi Karen

My paternal grandfather died from a SAH when he was 63. My cousin (from that side of the famliy)had a SAH in 2008 at the age of 62. Her sister died from a SAH in June 2009 aged 52 and I had my SAH when I was 49. At the time of mine I had no idea about the others because I don't really know my dad's family. But I did a bit of digging to try and make sense of why I'd had one. I didn't fit any of the usual triggers. I have 3 sister and 2 brothers. 2 of my sisters have requested that they be checked and that's being processed. The others don't want to be checked at the moment.

I discussed this family link with my consultant in July and he told me about the "2 first degree relatives", cousins are 2nd degree relatives. So I asked him did he think that it was a coincidence that my family members had SAH's and he replied no! But he did advise that I should discuss it with my 3 children and that it would be advisable for them to be checked. I have done and all 3 want to be scanned once they reach 30. My surviving cousin lives in Canada and has a 45 year old daughter who has been scanned twice and will be continually scanned every 3 years (if she wishes). On hearing about our grandfather the Canandian docs said there was a link! That was before me and her sister had had SAH's!

I keep an eye on my youngest son. He has the same kind of headaches that I was plagued by throught out my life, as had my two cousins, I now know. But I no longer get those kind of headaches!

My consultant believes that my anni was caused by a fault in the make up of the artery. My artery had a bend in it, when it should have been straight, and the anni was dissecting it on tip of this bend. He thinks that maybe the anni developed after the SAH, caused by an arterial dissection, I had when I was 37 (I thought my migraines had just moved up a notch)He told me that this flaw could be present in another artery or maybe not, no way of knowing unless I start to develop another anni. This is why they keep my blood pressure just below "normal" and that alcohol is a no no for me and I have also been told to stay away from cigarette smoke!

What a very interesting thread Karen, thank you.

[jess]

I'm the first as far as i know hopefully the last. Jess.xxx

[Karen]

Thank's guys for your response!

I'm posting the following response to this thread from our new member: David A - Many thanks David!

I had a SAH in 2006 (4 day coma, 3 months in hospital and left partially sighted). I still have a good life though

Anyway, My Auntie Gillian died of a SAH when she was 29 (it was about 1983 and she was in the late stages of pregnancy). My Uncle David, around the same time, had a couple of brain haemorrhages. One of his daughters has had a coil succesfully fitted to her aneurysm. My Mum has two aneurysm.

There is a genetic link, and it seems to be very strong in my family. I'm guessing that I was always at risk, and I survived. As I was insured I can live maybe not the life I planned, yet still fulfilling (in the main...)

David.

[rod123]

Hi all hav'nt had time to read all the replies but from something which was said along the way i was of the understanding that doctors fully accept that there is a genetic connection, and i was also of the understanding that if 2 or more of your family had, had an sah then you should talk to your doc.

Rod.

[janevo]

My brothers and sisters have been advised to be checked as mum also had a SAH but my daughters have been told they should be ok as they have not got two 1st line relatives.