Stewii, I'd like to say that the fears and frustrations go away over time, but they don't. Each of us has to decide daily whether we're going to let fear and uncertainty own us or whether we're going to thank our lucky stars that we're here! Most days I love and appreciate every breath of fresh air in a way I never could before my AVMs, but there are occasions that the dark side wins. Then I'm really glad for this group of wonderful people! Everyone here understands - young or old, we go through the same emotions, and it DOES really help to know you're not alone. I'm at the other end of the age spectrum - 62 when my AVMs were discovered. At 19, you probably think I can't possibly understand you, but AVMs don't care. You may need to redefine "living life at its fullest", but having an AVM CAN make every day more special.
I'd really recommend that you get several opinions, not just about whether your AVM is operable, but also about how to deal with it. There are several threads about what to ask your surgeon that I wish I'd seen before I started having procedures. My final neurosurgeon, Dr. Dong Kim, has operated on many "inoperable" AVMs and has also saved lives after bleeds that might have been prevented. (Personally, my fear of bleeds is greater than my fear of surgery, but that may be because I didn't have a bleed, because my surgeries were successful, and because I'm an absolute control freak.)
Hang in there, kiddo! We're here for you!
Susan (Mother Eckles)