Hey redleg.
I totally get that "million questions" thing. When I was first definitively diagnosed with an AN I really indulged my "researcher" aspect and went super deep into everything I could read. I've had consults with man, many of the specialists in the US who are mentioned on this site. In total I've seen more than a half-dozen different neurotologists at as many different clinics. They almost universally agree, which has really helped settle on my course of action. I do think a more normal person would be just fine with a couple consults in most cases.
As for my tinnitus -
It's sort of layered: there's an ever-present very high pitch "eeeeee" which I think is pretty common for us. In addition, then there's a pretty loud "whoosh" in time with my heartbeat: like my own personal sonogram. Sometimes there's a really nasty "siren" type effect - like a "waaahhh" on the leading edge of the pulse. I read somewhere that pulsatile tinnitus is sometimes actually audible to others, and had an ENT try to listen to it with a stethoscope. One looked at me like I had two heads and was then blown away when she said she thinks she could hear it. She brought in a couple other residents who tried; a few said they think they can hear it and others couldn't. Good times. Beyond those two types, there's also an intermittent low tone which comes and goes.
All in all, it's pretty freaking annoying. I listen to a lot of music to try and drown it out. A couple of ENTs have suggested that a cochlear implant, should I be a candidate when it's time, may be effective in reducing the tinnitus. However, since my AN is in a rare spot, few people have ever dealt with more than a handful ANs inside the vestibule, so I get a lot of "I really can't predict" answers.
That said: yeah I'm very comfortable in W&W status right now. Nobody is willing to give me any reassurance that the vestibular symptoms I experience or the tinnitus will improve with treatment, and they are universally certain that, for me, any treatment will completely deafen me on that side: the cochlea is simply too close to my tumor to survive treatment (this applies to both the various radiosurgery and traditional surgical options). Beyond that, though, my own research shows that "doing nothing" has by far the best long term outcomes in terms of hearing preservation, which is my main focus. My AN is outside the IAC and relatively distant from the facial nerve so the usual AN concerns about pressure on the brain or facial nerve symptoms aren't on the radar (fingers crossed). So, for me the plan is to continue to wait & scan and should the AN eventually take out the hearing such that there's no audiological downside I'll probably get it removed and something like a BAHA or CI inserted.
One final thing: I was pretty freaked out and depressed when this all went down last year. I'm much, much better mentally now. I think any of these major medical adventures tend to be shocking, but with time we get pretty good at adaptation.
Hope that's helpful and good luck with your AN.
Liam
