I don't have an AVM

I have recently learned that I do NOT have an AVM. I have a cavernoma. I would like to extend my heartfelt empathy to all of you. Every day I worry that something, anything, will trigger another bleed and I’ll seize. Since my seizures are generalized I don’t experience aura’s and thus, do not get any warning to make myself safe…and private.

I also learned that mine IS operable if I wanted to. I’m not sure how I feel about having someone open up my skull and take out bits of my brain. The thought is disconcerting to me.

Because of the nature of this board, I will be removing myself from here soon. I just wanted to explain why I am leaving.


God bless you and best wishes on your health journey. We are still always here for you too. Mare

Jen- It must feel good to have a correct diagnosis, right? And while it may not be an AVM it is very similar and still related. If you ever feel like you need support or people to talk with, please know that everyone here will welcome you back with open arms! If you decide on surgery or have questions, I’m sure it is so similar that experiences of some of our members could still be valid and helpful to you. Good luck in avoiding those seizures. At least when you are in public you know that there will be someone to help you, right? Not sure if that helps the fear at all. I doubt it does.
Wishing you the best! :slight_smile: