I had my AVM discovered and removed when I was 15 years old. Because of my young age, my surgery and recovery emotionally and physically really effected me. Even now, at 21, I find myself still dealing with emotional hurdles from my surgery because I wasn’t emotionally mature enough at the time of my operation. I would love to create a support group for teens/young adults to talk about this very serious event in our lives that we fought at such a young age. If anyone’s interested, please feel free to comment or PM me
I can relate. I had my AVM rupture when I was 10 years old. It was a rough 2 years. I was in and out of the hospital with surgeries and recovery. My physical health came back surprisingly fast but it was tricky keeping up with school. I looked like your average kid. Had great health did sports but it was a trick with having short-term memory loss. Having short term memory loss is more of the hidden scar then the actual scar from my surgeries. The most frustrating thing about it is we look normal but when multitasking it’s a trick to keep up in school. It’s not bad but that’s what people don’t understand. Some teachers just thought I just wasn’t paying attention in class but I was trying. It was trickery in some subjects more than others. Evan to this day sometimes when multitasking at work I might misplace something and forget where it’s at. Luckily my boss knows my story because he worked with the family and new me when my AVM rupture happened. He’ll cut me some slack if I misplace something or forget.
We’ve thought a little about having a teen/young adult group in here and I completely agree that it is good for you to be able to support each other. If you get a decent number of people together, let me and the moderator team know what you think you need in terms of a space to chat etc and we will see what this platform provides that could do what you’re thinking.
We would want to make sure that the conversation is still “moderated” so as to look after everyone involved but I am equally convinced that there are good answers as to how we could do that as well.
Round up some troops and let’s see how we can help set you up.
(I don’t qualify: I got to 50 before discovering my AVM)
