Hi all! I have been snooping around on the site for a few months now and have been feeling so humbled by everyone’s stories.
My experience is a little different and in some ways I am quite lucky- Due to a genetic medical condition (Hereditary hemorrhagic telangiectasia) passed down through my father’s side of the family, I knew at a young age that I had a 50% chance of developing HHT (and therefore very high chance of having AVMs) and got tested early, before any rupture. The diagnosis was confirmed and 13 years ago (at age 12) an angiogram confirmed AVMs in my left frontal lobe and right posterior medulla. The AVM in my frontal lobe was treated with cyberknife, while the other, in the medulla, was in too sensitive of an area to treat and I was told should just be kept an eye on via angios every couple years.
…Then 13 years went by where I neglected to have it looked at (though I should note I did have pulmonary angiograms done and embolization for several pulmonary AVMs found during this time lapse). This past November I finally went in for another cerebral angio, and it was discovered I actually have yet another cerebral AVM which wasn’t seen previously, in my left fronto-parietal lobe, which also has aneurysms intertwined. I’m now scheduled for an embolization in a couple weeks, where they’ll also be performing another angio to help determine whether a craniotomy is going to be needed afterwards.
I know I am incredibly lucky that my AVMs have not ruptured and that I live in a part of the world where I have access to great care, but I’ve still been going through a lot of anxiety about all of this the past couple months. This site though and reading the stories of people who get it has been keeping me going. I wanted to finally post mostly because I want to let others know that you are not alone in what you’re going through. Please reach out if you are going through similar experiences and have any questions or just want to talk about it! Thank you so much everyone for sharing your stories and allowing me the space to share mine!