My husband is 40 years old. He has a large, deep AVM. He has had 2 hemorrhages in his life - one at 21 that they embolised and one at 24 which they said was smaller (though gave him minor paralysis on his left side) and so didn’t treat.
They told him at the time that any invasive treatment was too risky as it was deep, large with several weak spots. And so he has just gotten on with his life, living to the fullest.
This year I convinced him to go for a check up and he’s had an angiogram. They have told him he isn’t a good candidate for gamma knife. But they are now recommending a staged endovascular surgery to try to clear the AVM.
They has told us that it would likely be a 3 stage programme and that each surgery presents a 10% cumulative risk of harm to life, limb & mind (their words). I know risk of reoccurrence each year is 2-4% though I’ve read different stats and his does seem high risk and so could be higher.
They have left the decision with us to make - treatment or just leave it. We have a 4 year old son. I have no idea how to help my husband make this decision.
Hi @rebben and welcome to the community.
That’s a very difficult decision you have to make & I don’t envy you it at all.
I guess you need to weigh up the risks of leaving well alone vs the benefit or going ahead. Is he able to live life to the fullest at this point ? What are the risks of it happening again and if it does what affect could it have on him…relatively mild like the last one or could it be much more severe.
Could he have stage 1 of the surgery & if that wasn’t as successful as you’d hoped/expected then opt out of the rest or is it all or nothing?
Thanks Ann. These are all good questions. He lives a very full life now. The risks of re-rupture are 1-8% on average every year. This could be mild but the doctors have said it could also be catastrophic.
I think a big part of the quandary is no one can give you absolute numbers on risk of going ahead or leaving it untreated.