I'm having a difficult time making a decision whether to proceed with SRS and would appreciate the thoughts from others who have navigated the AN journey. In 2010 I was experiencing tinnitus and occasional small bouts of dizziness, so I went to an ENT who prescribed an MRI which found an AN on my left side. It was fairly small, about 4mm X 4mm. The ENT referred me to Dr. Brackmann at House who has been my AN doctor ever since. I discussed it with Brackmann, joined ANA, did some research and decided to "watch and wait". For 14 years I've had multiple MRI at decreasing frequency and the size has varied between 4-5mm, which I attribute more to measurement variation than actual size variation. I have Tinnitus and the hearing in my left ear has historically been about 10dB below the right, which has typical age-related degradation, I'm 66 years old. The AN had really no affect on my lifestyle, no limitations on what I could do. In 2018 I had a bad episode of Vertigo, I couldn't even stand up. It lasted less than an hour and, in a week, or so I seemed back to normal. There was no proof it was due to the AN, but Brackmann and I both think it likely was. In April of this year, I woke up one morning with horrible Tinnitus, no hearing in the left ear and I couldn't walk a straight line. I went to see Brackmann and he did Steroid in injections in my ear and put me on a strong oral steroid. The steroids brought back a lot of hearing but now I'm 15-20 dB down on the left side, depending on frequency, and the sound is distorted, kind of like a Kazoo. We did an MRI and the AN has not grown. Tinnitus is about the same, maybe a little worse, and my balance is back to normal. I know most people have SRS to reduce the size of their AN, but mine is small and hasn't grown in 14 years. What I want is to stabilize my situation; keep my balance, keep the hearing from getting any worse and just live with the Tinnitus. Brackmann says based on his experience if I do nothing it's only a matter of time until I lose all hearing in my ear. And he can't say how long the benefit from the steroid will last. He also says the data on whether SRS will stabilize my situation is inconclusive. My feeling is I want to take some action, fight back against the tumor to prevent it from acting up again in the future. If I just sit around and wait until my hearing is gone then I know it will be too late, there is no getting it back. But then I read reports from some people that SRS has made their symptoms worse, it seems like the minority but the chances of having a problem and things getting worse can't be ignored. Has anybody been in a similar situation? Any thoughts on who to talk to or where I could get more information to help make the decision? House no longer does SRS so I had a consultation with Dr. Lee at USC Oncology and he feels confident he can do the radio surgery and kill the tumor. They use True Beam instead of CK or GK.
Thank you to anybody who provides any help at all.
Jeff
