AVM Survivors Network

Young survivors unite!


Hello again everyone,

It has been a rollercoaster of a ride since the last time I have visited this site or made a post. I have found that we all battle in our own ways and that is okay so taking myself out for a while and focusing on other things has really helped ground me about the lack of information regarding my calf AVM. Since the last time I posted I have not went in for any updated MRI’s or treatments due to the fact with a busy changing life schedule things have just been crazy.

I just wanted to take the time to stop by and say that this website has provided me so much support when no one in my life seems to understand the severity of my anxiety and stress about my own health situation. So, If there are any young survivors new to this world out there I wanted to say I am always here to provide emotional support.

Breathe Easy fellow warriors<3 Thank you for all you have done for me.



Hi there. I don’t think I would really be classed as ‘young’ anymore. But I was young (14) when I first began having symptoms. Unfortunately medical technology wasn’t advance enough then for medics to tell me anything about the root cause. It was another 15 years before they could confirm I had a cerebellar AVM. I have lived with it all this time though and it hasn’t been treated. Just to say that if you ever need some support/advice from a not-so-young-anymore survivor just message me. Cheers Lulu