Hi, dufreyne:
Allow me to extend yet another welcome to the site/forums as well as my regret that you're a member of this relatively unique 'club'.
I'm very pleased to read your analysis of the intent and scope of the ANA message boards, which I find both astute and correct.
We don't have many physicians posting here, although the ANA does have many doctors as members, advisor's, etc. The gifted neurosurgeon that performed my
retrosigmoid approach surgery has been a member of the ANA since it's inception. Its' always interesting to get a doctors perspective when he (or she) becomes a patient. The confusion and contradictory information, as well as the negative aspects of surgery and radiation can, as you noted, drive one a bit crazy. Sometimes I suspect that having medical training and education can exacerbate the situation because you 'know' too much, when the reality is that with acoustic neuromas, there are no hard-and-fast 'rules' and thus, no absolutes to lean on. This can be threatening and frustrating for the ordinary patient and likely even worse for an experienced physician, like you.
Your 'story' was compelling and definitely unique, although the long and winding road to an MRI and a definite diagnosis is all-too familiar. I was somewhat fortunate in that I (foolishly) ignored my symptoms and they intensified rather quickly. That triggered a (rare) trip to my PCP, a blood test based on a false guess on his part (hypothyroidism) and then, an MRI scan, intended to look for a 'sinus problem' but instead finding a large AN pressing hard against my brainstem. From there, a rejection of the neurosurgeon I was initally referred to (clearly intimidated by the size of the tumor and too light on AN surgery expertise) followed by the serendipitous referral to a partner of my wife's neurosurgeon (she has undergone extensive spinal surgeries) who was the resident expert in acoustic neuroma removals (30+ years experience) and even instructed medical students at nearby Yale university. We hit it off immediately (he's around my age). This doctor was alarmed at the size and location of the AN and scheduled surgery within a week, the time it took to get his hand-picked team together; no residents or interns. As he put it:
"An acoustic neuroma surgery OR is no place for amateurs". I liked his attitude. During our initial consultation (50 minutes with absolutely no interruptions) I made it crystal clear that, along with ridding myself of the tumor, avoiding facial paralysis was a primary concern. He understood and set out a plan of 'attack' on my AN. First, a 'de-bulking' of the AN. He termed it
'hollowing it out' Then, after a 90-day 'rest period', FSR treatments, carefully calibrated with a radiation oncologist my neurosurgeon liked to work with. I ended up with 26 FSR treatments - with no ill effects, except to the tumor.
The AN surgery went well and I never experienced facial paralysis. I was driving again within two weeks of the surgery, with my surgeon's approval, of course. I had a few inconsequential after-effects from the surgery but they either resolved quickly or are insignificant and have no real bearing on my quality of life. As you would expect, my neurosurgeon is elated with my outcome. I thank God for putting this fine doctor in my life at a time when I needed him. I'm also grateful to have avoided, by sheer chance, the misdiagnosis runaround that so many AN patients suffer through, as you did.
I try to encourage the newly diagnosed, like you, that all is not 'gloom-and-doom' with an acoustic neuroma diagnosis. I think your medical education and experience tells you that. This website and the forums are definitely supportive and informative, filled with good folks who, as you noted, are all having the same experience with a myriad of manifestations. They try to share their hard-won experience with others in the same situation, when there is little practical information available, even now. Here, there is.
I'm pleased you've found us and trust that you'll be a frequent visitor and valued contributor. I hope we can help you, too.
Jim
