After having my first MRI that reveled a large cavernous angioma in the middle of my brain, I visited specialist after specialist searching for answers to my "list" of questions. Invariably, every time the "big day" of my next doctor's appointment would arrive, I would be so excited... thinking I was finally going to get some answers. And of course, I always had my list of questions ready to go. Visit after visit, I would come home disappointed, frustrated, and disillusioned. Most times none of my questions were answered...or if I got any answers they were often, "Maybe...we don't know..anything is possible." Mostly what I got was,"You "look" healthy to me." Too bad the things that are wrong with me are "in my head"...you can't see them and I'll tell you... I might "look" ok but I sure don't feel how I used to! These specialists often never even looked at my MRIs and... needless to say... I never went back to them! The uncertainty and lack of awareness surrounding this condition was glaring. How could so many doctors be giving me so much wrong and dangerous information? I couldn't believe it!! I'm a nurse. I look for answers. I need answers. I thought many times, "Where are all the people with the answers? How could I have a diagnosis, multiple pictures of this big thing in the middle of my brain, and NOT get answers?" It was beyond perplexing to me.
This is where AA helped to straighten me out, keep me sane, and always encouraged me to remain motivated in finding the "best of the best doctors"....doctors that really know and understand what a cavernous angioma is, how they work, and how they can effect you. Angioma Alliance supports patients afflicted with this condition in so many ways: by connecting patients with other patients, educating health care providers and patients alike, funding research, and on and on. For me, connecting with other people that share this diagnosis and reading their stories has helped me to understand so much. Thank you to everyone that has shared their stories, experiences, struggles and successes! What I was (and am) going through was (and still is) frightening at times, but somehow by speaking with others that have "been there, done that"...traveling down this road no longer seemed (seems) quite so impossible. Not to say that I now have nerves of steel....I'm the same wuss I've always been :) ...but at least I am able to do what needs to be done for my amazing husband and precious little boy. Thank you Angioma Alliance and all my AA friends! I can hardly wait to be well enough to give back!