Hi Mark and welcome to this forum of new, caring, supportive friends .....
Your story parallels mine in so many ways ..... I can fully empathize with your angst.
I was a church organist, as well as a singer, for all of my adult life. I retired from regular, active church music work about a year before I was diagnosed. Perhaps it was a sign because things just did not feel right when I retired.
Like you, once I made the decision for treatment, I was strangely calm and have remained that way through several ups and downs. I believe strongly in the power of prayer to make this happen.
As you can see from my signature below, I have had two AN surgeries. Not to frighten you because each of our stories is unique, I will briefly explain my journey. My first symptom was not hearing loss, but significant balance issues (a couple of unexplained falls). It was when the hearing loss began, I sought diagnosis and treatment. Unfortunately my AN was of the rapidly growing type (clear MRI to 2+ cm on a repeat MRI 15 months later). I have a history of massive radium treatments to my head as a teenager so between the rapid growing type and that, surgery was my only option. I was referred to Duke University where the highly respected and AN experienced neurosurgeon felt he could save my hearing (it was at 80%, with 100% speech discrimination at the time of surgery). Therefore he removed the AN via retrosigmoid approach and I did retain 20%, with still 100% speech discrimination. I managed rather well with a regular Widex hearing aid until my tumor grew back within three years. At this point, I knew I was in the "rare, unusual" case scenario, plus I had had three years to continue my research, so I sought out what I felt were the most successful, experienced AN surgeons in the country. I went to House Ear Clinic in LA where Drs. Friedman and Schwartz removed my regrown tumor via translabyrinthine approach. Already I was losing some of my remaining hearing so I knew going in, the rest would be totally gone. Therefore, Dr. Friedman installed the abutment for my bone-anchored hearing system during that surgery. I am almost five years out from the second surgery and so far my MRIs have been stable. I am very grateful.
I am going to be very honest and tell you this has had a major effect on my listening to and performing of music. My only hearing ear tests perfectly normally on an audiogram but somehow it feels like it overcompensates for the loss from the other ear. The Oticon Medical Ponto Pro is a tremendous assist, but it cannot duplicate natural music sounds and it transfers sound to my only intact cochlea. Thus, the stereo affect is missing. I do continue to accompany and do substitute organ work, but I no longer sing. Since you would know, a strange thing occurred post-first surgery, when I no longer have perfect pitch. That has resulted in a significant way in how I now perceive music.
If you would like to talk, send me a private message and I would be happy to call you (or you me).
Thoughts and prayers.
Clarice
