Hi, Dan & Lo ~
We appreciate your taking the time to post about Dan's AN experience and the fantastic treatment he received at HEI. Very helpful information.
I have one caveat: although HEI is the 'premier' hospital for AN surgical procedures, other doctors in other facilities around the country are equally skilled and have successful outcomes.
I was diagnosed with a 4.5 cm AN in May, 2006. Following my first consultation with what I soon realized was a neurosurgeon inexperienced with ANs and clearly intimidated by mine, which was pressing hard on my brain stem, I was referred to an older (60ish) neurosurgeon, less than 30 miles from my home, who 'specialized' in acoustic neuroma surgery. My initial consult with this fine doctor was both informative and rewarding. With only a day's notice (he insisted on seeing me asap) he had mapped out a plan to 'debulk' my large tumor, sever it's blood supply then subject it to radiation (FSR) to destroy it's ability to re-grow. He chose this plan to minimize the chances of facial nerve damage which I let him know was a major concern for me.
Long story short: 9 hour surgery...totally successful. No facial nerve impairment at all, no headaches, not even nausea. My symptoms (dizziness, mostly) disappeared immediately. I was SSD by the time of my AN diagnosis (the cost of procrastination) so hearing loss was never a real issue and I had already adjusted to it by the time of the surgery. My surgical recovery was rapid and rewarding. After giving me a 90 day 'rest period', my neurosurgeon teamed with a talented radiation oncologist to 'map' the FSR (using a 'fresh' MRI and CT scan). I underwent 26 FSR sessions with a resulting 27Gy of targeted radiation - and absolutely no adverse effects. I drove myself on the 60-mile round trip to each session (Monday through Friday, weekends off). Almost seven years later, I'm doing great! No recurrence of symptoms and my last MRI indicated the beginnings of necrosis and shrinkage of the remaining tumor.
My point is that while HEI is an outstanding institution that many of our members have used and are enthusiastic about, it is not the sole place in the U.S. to receive excellent outcomes to AN removal surgery. However, it certainly is the 'gold standard' for AN surgery. In fact, had I not found a local neurosurgeon that was experienced in AN removals, I was considering HEI as my 'fall back' choice.
My congratulations on Dan's splendid surgery results and again, thanks for posting your story.