Hello
Adrienne - and welcome to our little corner of the internet.
Just about all the really good responses have already been offered (research, multiple doctor consultations) so I'll just amplify a few and try to add some perspective.
A patient with an acoustic neuroma being misdiagnosed is all too common, I'm afraid, as is the frustration of doctors offering supremely confident but often totally contradictory opinions as to what you should do.
Surgery! No, wait....
radiation! Er, well, maybe
'watch-and-wait'. This dichotomy is not only confusing but exasperating and although it shouldn't be like this, the reality remains that it is. The imperative issue here is that
you'll have to live with the results of whatever decision you make, not a doctor. This is why being informed about the choices you have is critical to making a wise decision on how to best address your AN. Still, the cold, hard truth is that, no matter how much research you do or how sure you are about your doctor and treatment, there are no guarantees. I wish there were. We all do. But, we live in reality and have to face that one, like it or not.
I was fortunate, in a sense, in that, by the time I mustered enough sense to see a doctor about a 5-year slow-but-steady unilateral hearing loss, intermittent stabbing pains on one side of my head, the near-total loss of the sense of taste within a six-month period, extreme fatigue and a few other things, I was directed to a highly experienced neurosurgeon who was (rightly) considered the most experienced doctor in the area when it came to treating patients with an acoustic neuroma. His success rate was excellent, he was clearly very knowledgeable and compassionate (he listened to my concerns) and later, while I went through my lengthy pre-op testing, more than one nurse - when they asked who my surgeon was going to be - stated that I had the best surgeon around for 'that kind of tumor'. This good doctor was clearly alarmed by the size of my AN (4.5 cm on the MRI, actually over 5 cm when they got to it) and when I made my concen over the possibility of facial paralysis clear to him , he offered me a two-step plan of attack. First, a debulking (
'sub-total resection') to cut off the tumor blood supply and reduce it's size, then, following a 90-day 'rest period', 26 FSR 'sessions' to destroy the remaining tumor's DNA and effectively 'kill' it. The neurosurgeon presented this to me as his plan and said he hoped I would 'hire' him, as he felt this was the best way to address my large AN. It was basically a take-it-or-leave-it proposition. I took it - and never regretted my decision. The surgery went very well, my recovery was rapid, and the radiation sessions were boring but ultimately successful (see my signature, below). So, in a way, I didn't have all that much choice. Frankly, you're right about the hassle of 'too many' choices. It can be perplexing, to say the least. I concur with my fellow posters that 'going with your gut' is probably the best way to choose a doctor and a treatment. Once the neurosurgeon talked to us (my wife and I) I had no doubt that this was the doctor I wanted and that his plan of attack on the AN seemed reasonable and had a very good chance to be successful and spare me difficult post-op complications. I was right. No real post-op complications and certainly no regrets about my decisions. I wish you the same.
FWIW: I can tell you that being SSD is not so terribly dreadful. I've adapted quite well and learned how to compensate for my hearing deficit. Many people I've come into contact with had no idea I only hear in one ear. However, some AN patients with SSD obtain BAHA implants/processors to help them hear. I don't choose to use that option but it remains a possibility for any SSD person and should be seen as fall-back for any substantial hearing loss you may experience.
I wouldn't beat myself up and feel guilty because (a) you don't want to die, (b) you want to get through this with minimum complications. Here's a little secret, just between you and me, Adrienne:
that's what just about every newly diagnosed AN patient thinks. I did. I was blessed to have that desire fulfilled and I'm pleased to report that I live a pretty normal life, today. I believe many prayers for me were answered in the affirmative. I've never felt guilty, only blessed and extremely fortunate for my successful outcome. I try to show that appreciation by attempting to help and encourage other AN patients, especially those newly diagnosed or post-op and suffering with (occasionally debilitating) complications. I'm confident that once you're through this AN 'journey' you'll do something comparable. We have some AN 'posties' here that struggle with post-op/radiation issues every day but still manage to post encouraging and even humorous messages quite often, so the least a complication-free AN 'survivor' like me can do is try to emulate those courageous folks.
I hope this lengthy post hasn't bored you (or anyone) and I trust that you'll learn much more on your April 20th Dr. consultation.
Jim
