I seen a post earlier that an 18 year old had a brainstem AVM and there was no procedure out there. I would just like to say that it has not been a death sentence to me. I am 34 years old and I was told 2years ago that I had a brainstem AVM and mine has not ruptured. I have had a neuro surgeon and vascular neuro surgeon tell me that there could be no surgery that would be safe to do. I have also looked into having the Cyber Knife radiation treatment and the vascular neuro surgeon with that group said that he could not say for a certainty that we would have the results that we want. But why I am saying this is because I am 34 and although I have a lot of pain, and have dizziness it has not ruptured.
I had surgery to remove an avm in the brainstem area at the age of 48. I had headaches and dizzeness which sent me to see my doctor, and that is when they found the avm and also sent me to UCSF that day. I had to relearn to walk, swallow and still have emotional problems but the avm is no longer there and I am getting stronger each day.
I had a cavernous AVM at the brain stem that was blocking the 4th ventricle 12 years ago. It was “cut & clipped” with surgery. I had to learn to walk again as well. My balance & eyesight “is off” when I tire. Five years after the surgery, I went back to school & became an Emergency Room nurse & I’m very active in fitness & healthcare now! I still have headaches & am in fear there are more AVM’s. but I am alive & live everyday like its my last…