So glad to have found this forum! Hooray for ANA.
An audiogram in Feb revealed "essentially normal hearing from 250-2000 Hz, precipitously sloping to mild to severe sensorineural hearing loss from 3-8 kHz" in my left ear. An MRI 2 weeks ago revealed a 1.0 x 1.3 (axial diam) x 0.7cm (craniocaudal) AN that extends into the internal acusticus canal.
I was referred to the Buffalo Neurosurgery Group which performs gamma knife stereotactic radiosurgery. No other options were offered. However, when I asked about the CyberKnife tool, the doctor told me it was less accurate (because of the free arm -- logical, right? he stated) and strongly urged me to schedule gamma knife surgery -- right down to handing me consent forms to sign. He stated that 40% of his gamma patients retain the hearing they went in with. Huh?! That means that 60% do not. Then he clearly stated that 60% of his patients end up without "functional hearing" in the AN ear.
My preliminary research has shown that hearing preservation is statistically as high as 75-95% using CyberKnife technology, and that the risk of damage to adjacent tissues is statistically lower due to equal precision but lower radiation doses. These two factors are very important to me. Does anyone have access to objective data that supports this?
This data is critical because apparently CyberKnife technology is not available in Buffalo/Western New York (the closest I can find are in Syracuse and Cleveland). Although my insurer does cover out-of-geography treatment for most subscribers, I entered the system through a "low income portal" which limits treatment options to a very small geographic area.
So it looks as though I have a battle on my hands. And since there is reason to believe that I may number among the 10-20% with a fast-growing AN, I need to fight this quickly. Hard data that justifies the time and effort and that also provides ammunition for this argument with the insurer would be greatly appreciated.
