Im worried about my AVM bleeding

I was told from my doctor that my AVM has a 2 to 4% chance of bleeding each year. I was also told that I was most likely born with it. Since I am 38 years old what exactly does that mean. Im assuming at best you multiply the 2% by 38 which equals 76 chance of a bleed. Im just curious and worried because my doctors keep refering me to other doctors. My Avm is deep inside my brain and according to my doctor its in a high risk area. I was recently refered to the University of Pittsburgh and he also mentioned a facility in Sweden. Should I be worried because I feel like time is running out and im not sure this will be obliterated in time.

Hello Christopher, I am also 38, but I have known about my rather large avm since I was 13. Many patients long before you and I have lived full,complete lives without ever knowing about their avms! I knew of a surgeon who passed away of an undiagnosed avm in his 80's! He was an orthopedic surgeon his entire life, never knowing he lived with this. Not all avms are death sentences! Check out my blog, I didn't seek treatment until I was 35 when my symptoms became worse. Pitt is a great facility. Best of luck in ur research and feel free to ask whatever is on ur mind. Welcome to the group, Survivor! -GK

Welcome to the world of AVMs Christopher! You will encounter a lot of unknowns and variables; that's just the way it is........... It's not like if you have a blockage--everyone agrees how and when it should be fixed. AVMs are a different critter.

My wife's AVM showed up in 1991. One of the first controversies we encountered as we started to try to understand AVM was "Is the risk of bleed, which is listed as 2 to 4% a year, CUMMULATIVE or is it that same 2 - 4% this year, next yr, the yr after that, etc." I've read and heard arguments on both sides.

Most likely, you have had this AVM for a long time, maybe since birth and it hasn't bleed yet. If your symptoms are getting worse now as your body ages, your risks might be higher--or NOT. Chari was 40 when her's showed up. A few Drs suggested that was a common age of presentation.

I suggest you go see the experts you've been referred to. Then have your files sent somewhere else for review. We chose Mass General in Boston and Stanford in California. You want to have someone who's seen thousands of AVMs like yours to review it and recommend action.

If some physical activity leads to big migraines, I'd throttle back on those for now. If you have migraines all the time, probably won't hurt to keep the activity up.

Best wishes,
Ron, KS

Thank you very much!

Thank you very much!

Like William, I've heard arguments on both sides. As for me, I was 38 when I had a bleed. I never knew I had the AVM. If your AVM is becoming more symptomatic you may wish to pursue treatments. Seeking multiple opinions with doctors that have experience treating AVMs is your best bet. Best of luck and let us know if you have questions.

Thank you, I really appreciate it.