AVM Survivors Network

What do y’all think

I think i spoke here years ago. I had my third stroke last February. Two months ago i got a call. The avm that had randomly grown was gone. I was cured.

Has anyone ever heard of Rachel Hollis? I found her last year when I was at my lowest of lows. Last weekend I went to her conference in Dallas. It further encouraged me to follow my dream and inspired me.

I want to write an inspirational book but I wanted the actual survives opinion.

I was really depressed and I’m slowly coming out of it. I’m a 3x stroke survivor, I’m a divorcee and have a four year old. I.grew up in an alcoholic and divorced home. I think stress caused my avm to grow and rupture


WRITE YOUR BOOK! i have thought of writing one myself many times (i would write Lord of the Rings type if i do). listen to NIKE and just do it



Same here; I was told after a craniotomy where I fought my way back from left side paralysis to be able to go back to my career as a professional dancer that “Oops! That problem with your left ankle is actually the AVM, which has grown back to larger and more complex than it was before we operated last time.”

Crushed does not even begin to cover it. The regrown AVM was too large and too complex to do another craniotomy on, and gamma knife was only slightly successful (reduced the size by 25%.)

Glad to hear that you’re slowly coming out of your depression! This survivor’s opinion is that AVM is still rare enough that we don’t know much about it - doctors told me I was cured, when clearly, these things grow back, even when “obliterated”, even in an adult.

Write your book! This type of story needs to be heard. Also for those of us who have an AVM we know, it really helps to hear other peoples stories. Write your book!!!

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Hi Mahadee here from AVM Brunei, what’s your age currently? I have a son whose AVM relapsed after 23 years, after it was embolised when he was 1 year old, his AVM was so congested that he had seizure, for now it has been 4years since his embolization and haemorrhage on his brain. He is in vegetative state, woke up open his eyes, but we don’t know as to whether he recognise us or what’s going on. Bottom line is, he is still with us, after we almost lost him twice.