This site scared me, but I'm back

Hi everyone,

I wanted to say thanks for all of your kind messages. Finding this site has been a very strange experience for me. I had my AVM as a kid (nearly 20 years ago), when there really wasn’t much info available (no internet…etc.). So rather than meeting similar people or gaining an understanding of what had happened, I just pushed it aside and got on with my life. So much so, that for many years I lived a kind of denial, pretended that it hadn’t happened, and did everything I could to hide my problems.
I never accepted that I could do less than others, and always pushed myself - often to exhaustion.

Since visiting this site, I have been reminded of what my AVM meant, and how it was real. I have spoken with some doctors, found a local Neurosurgeon, had a CT scan, and really accepted that it happened. This also meant tracing back to my records from Hospital archives, and going through everything in detail. I’m really happy to have found this site (I’m no longer too scared to log on!), and hope to help others, the way many of you have helped me!

Hey. I just found this site today, and I’m already happy that I decided to sign on. I was the same as you. I had denied the reality of my condition for such a long time… just wanting to be like everyone else. It wasn’t until I was about 24 years old that I started being honest with myself.

When i first started searching AVMs online and I saw the photos and stories of other people with similar conditions, all i could do was cry. it was an emotional release… not of relief really, but just to know that i’m not alone and also sorrow that other people deal with this condition just like me or worse.


Hello Kirsty. An amazing story of a brave woman on journey of discovery and hope…you. Be good to you. Take care of you. You are in my thoughts and prayers.

hi kirsty,
glad you decided to log on again…i am sure we have all shared the experience of denial…hang in there mate

I agree this site is great. And there is so much more information about Avm’s than in the past.
This network is fantastic. It’s great to connect with others who have had similar experiences.

This site scares me more then anything and I almost stopped looking on here. I think sometimes too much knowledge isn’t always for the best. I have to remember though that everyone is different and not everything I read is going to happen to me. AVM’s seem to be pretty individulized… each one unique in their own way and symptoms and procedures and treatments may be good for one but bad for another. This is a great site for support for sure!

Hey I also just found this site. I had my AVM 12 years ago and I also have to admit that I have been in denial too. I have 4 sibilings and I have always surpassed them in everything it hasn’t been until recently that realized that I don’t have to try so hard the sheer exhaustion of it all has whipped my butt for long enough. This site is great its a good feeling for me to know that there are more people with these same issues.