I’m a 45 year old male residing in the southern U.S. I was diagnosed with a large cerebral AVM in my left frontal lobe when I was 18 years old. My original treatment option was “watchful waiting” given the location and size of the AVM, and I’ve been good with this. Outside of an occasional seizure that always occurred at night, I only had to take my seizure medication, and I was otherwise asymptomatic.
All of this started to change about 4 years ago when I suffered altitude sickness on a trip to Colorado and thought my AVM was rupturing (terrifying). Fortunately it wasn’t, but I’ve not been the same since. I deal with anxiety, my seizures have increased, and I’ve developed headaches and auras that I never experienced before. I no longer drive (for now), which is more than a little inconvenient since I have to commute to work. In short, my AVM is becoming more symptomatic than ever which I’m concerned could lead to a rupture. It’s constantly on my mind, and given my age, I’d rather be proactive and deal with it now…if I can…before I get much older.
So, I’m looking to reevaluate my treatment options from a couple of the best AVM surgeons in the country. Ideally, I’d go back to Robert Spetzler who consulted on my original diagnosis, but he’s since retired. I’ve been waiting on my neurologist to recommend someone/someplace to me, but honestly I feel like she’s slow playing me and am tired of waiting on her.
So…I thought I’d ask this board: Who should I consider for a consult as the best AVM neurosurgeons/hospitals in the United States? I’ve heard Robert Solomon and Michael Lawton should be on my short list, but I may be way off.