Wow! Where do I begin? I was checking my emails this morning when AVMsurvivors.org showed up. I hadn’t seen this site in such a long time (thank goodness!). I am a grandma now, but my 12 year old son (he’s 41 now! ) woke up one morning with a seizure. We were so scared. Little did we know that that feeling would multiply by 1000 in the next couple of days! To make a very long story short, we found out our son had an AVM! We had NO idea what that even was back then. But, it was not good. Remember…this was almost 30 years ago. Moving on, Mike, our son, ended up having a craniotomy with no pre-procedures like GammaKnife or radiation. He was in surgery for 12 hours! (The surgeon said it would be about 4-6 hours!) His recovery lasted 2 years, including physical therapy. He was paralyzed on his left side after surgery so it was scary. No one really knew what the long-term prognosis was. It was very hard as my son was a very good little athlete. He loved all sports, and that was a big part of our lives. Anyway, he eventually regained about 80% of his ability to move on the left side. He still walks with a slight limp and it’s hard for him to grasp things with his left hand, but he is great! He married a wonderful gal and we now have 4 grandchildren! (Well, actually 5, counting my daughter’s daughter!). No, Mike wasn’t able to pursue his dream of playing sports in high school and college, but he found other interests along the way. Considering what he faced, he has grown to be a fine young man, if I do say so myself.
Why did I write this? Only to give other parents or caregivers a positive outcome even when there wasn’t much info or knowledge on AVMs back then. Always keep the faith, and make sure to be positive. Good luck and God Bless.