I have been browsing around here since I was diagnosed w/ AN last week. I have done a ton of research and even spoken to some people from this forum through e-mail. I have a bunch of questions and am hoping I can get some general consensus opinions.
My (brief) story: 29 years old, live in houston but all of my family is in NY, so I would most liekly be pursuing my treatment there. VERY physically active, professional clarinetist. My AN is 1.5 in the cpa w/ 1 cm growth into the ear canal. First noticed some hearing difficulties and onset of tinnitus in 2006, no functional hearing in the affected side as of December 2008, with possibble recent development of some balance/dizziness issues.
I haven't seen many doctors personally yet, but had an appt. w/ a very good neurotolgist in Houston who I liked a lot, and am seeing a rad. oncologist next week. I have spoken with some doctors or their nurses in NY via phone (Dr. Sisti personally, Dr. Gutin's nurse, and Dr. Golfinos' nurse), and plan to contact also Dr. Post, Dr. Steig/Selesnick.
I have uniformally been told at this point that I could consider both surgery or radiation, but so far only the neurotologist here in Houston is the opnly one who has seen the actual MRI films (said I could definitely consider radiation, the choice is mine, but if it were him he would do surgery based mostly on my age). I have also been told uniformly by everyone I have spoken to so far by phone or otherwise (Dr. Sisti does both surgery & radiation as does Dr. Gutin) that they normally don't reccomend radiation as the preferred course of action for someone my age. A family member who works at Brigham and Women's in MA spoke with the head of neurology there who recently did a complete review of AN with his team and they concurred that radiation is currently the best treatment option for this, regardless of age.
Ok, so I am feeling kind of at a loss. I am not ruling anything out for myself, and am considering endoscopic w/ Shahinian at SBI, as well.
Thus far GK has been mentioned to me but no one yet has mentioned CK.
I know that what I am going through is typical for a newly diagnosed person, and hopefully things will start to clarify. Part of me wants the darn thing out, part of me wants to do anything possible to avoid surgery provided the rate of success is similar. I am a professional musician and play clarinet, so facial weakness and paralysis are of great concern to me due to both age and profession. I find myself slightly concerned about long term unknowns (mainly due to lack of data) that exist w/ radiation, bu also concerned about more immediate risks and recovery w/ surgery.
Given my age and info I've stated, and your personal research and stories, what do you think? It has been slightly unnerving to me to hear two Dr's very experienced in both neurosurgery and radiation suggest they would indicate surgery for a person my age. Also, what about the ck/gk debate? Sorry this is so long. I have more, but I'll wait til later