family testing: found this site by accident and have... - Headway


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family testing


found this site by accident and have to admit reading some of the stories brings back a lot of memories, no warning whatsoever when my husband had a subarachnoid haemorrage unfortunately although surgery was performed he didn't manage to come through it, he was only 35. His mum died of the same condition 2 years later. It was 15 years ago since my husband died and I'm guessing a lot more research has now been done, and I wondered if anyone knows how I can go about getting my 2 daughters tested they are 25 and 23 the fear of anything happening to them is with me every day

5 Replies

Both my ex-husband and I had SAHs so you can understand the anxieties of our son and daughter, especially as their father didn't survive.

My daughter questioned whether she should be tested for irregularities in the brain but was deterred by health professionals who explained that, although both parents having an SAH increases the risk, it isn't inevitable. And even if it were the case, there's a good chance it will be untreatable,

It was put to her that there are thousands of people living in ignorance of the fact they have an aneurysm who will live long, normal lives and die having never known.

It was argued that being aware of such a health issue is of no benefit as if it can't be treated she would carry around the knowledge of a potentially life threatening condition which may, or may never, become an issue.

So the upshot was 'Go and live your life in blissful ignorance and, if it happens, it can be dealt with'.

It's such a personal issue for your daughters isn't it Janey, and this is just one perspective. I suggest you seek a referral to a consultant neurosurgeon so the three of you can get the facts for yourselves and hopefully make the decision less daunting.

Wishing you all well, Cat x

Good morning Janey

What awful circumstances my heart goes out to you. Love what Cat says here and for me I do this every day.

"So the upshot was 'Go and live your life in blissful ignorance and, if it happens, it can be dealt with'."


janey57 in reply to MXman

thank you for your replies, and sorry for your loss as well cat, I live my life in blissful ignorance both my mum and sister have both had breast cancer I'm one of those that would prefer not to know if I had cancer, however its my youngest daughter who worries as her dad was the youngest in the family and her nan was the youngest, I thought I was told if they find an abnormality they can clip it and keep an eye that the aneurysm isn't getting any bigger, when my husband died the neurosurgeon did say that the girls could be checked when they reached 21 but had no information how to arrange this, if nothing can be done then obviously its better that she doesn't know. xx

cat3 in reply to janey57

Janey, ask the experts. So much progress is being made in brain surgery techniques year on year as new procedures are beind developed.

Approaches might well have changed in the past 5&1/2 years since my haemorrhage. It's a matter of balance I suppose ; if your daughter is going to spend her life in fear then perhaps she's one of the ones who needs reassurance from someone in the business.

I do know of folk who've had un-ruptured aneurisms secured in the past couple of years so the prognosis, generally, might well have improved.

Get specialist advice m'love. No one can predict the outcome for an unknown, but perhaps things are more achievable than they were 5+ years ago. Best wishes, Cat x

I would ask your doctor to see if there is any way they can be referred for scans I had a brain haemorrhage over 10 years ago and I have a twin sister and was worried that she would have the same thing I had so I asked my consultant to scan her brain I had to persuade her as MRI scans are expensive but she agreed because she was curious of the results but thankfully my sister is fine

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