I saw a vascular geneticist yesterday and didn’t get any insight from that appointment. Has anyone had much luck with any doctors figuring out why we create these malformations?
Hi @DogLover34 I do know I got mine from having a rare type of stroke about 6 months before I mentioned my symptoms to my stroke Neuro.
I also have a genetic issue called Ehlers Danlos type 3 + and have met online quite a few who have a DAVF like me.
My great grandma also died from an “ aneurysm “ but no knows if it was really an AVM.
We believe the Ehlers Danlos came from her side.
All my cousins even males have it which it’s supposed to less in males and only a 50/50 you will pass it on to your children. But both my sister and I have it and we are only half sisters.
We are pretty sure her son has it too.
My understanding is that these things are generally congenital – i.e. formed in the womb – rather than being directly inherited.
There are definitely some genetic things that carry AVMs with them. For example Hereditary Haemorrhagic Telangiectasia (HHT) includes as it’s list of lovely effects that you might have AVMs or aneurysms and other such wonderful stuff. There does seem to be an occasional familial link for AVMs outside HHT.
Others have told me that dural AV fistulas (I have a DAVF as my variant of an AVM) are acquired over time (or, we believe so) as they tend to present later in life.
Insofar as you are in your twenties, it seems more likely that yours is congenital.
Hope some of this helps,