Each case in unique, and as you know every AN is different. Nobody has that crystal ball which can predict how someones tumor will progress.
My case was certainly unique in a few aspects.
I had "suicidal tinnitus" or "catastrophic tinnitus." I was off the charts loud. In most cases, it usually takes 6 - 18 months for newly diagnosed patients with severe tinnitus to acclimate to their new tinnitus (with the help of a hearing aid or masker).
It's been about 4 or 5 months since starting the tinnitus retraining therapy with the hearing aid, and recently I haven't worn my hearing aid in 2 weeks....so MUCH progress has been made indeed.
I started out at 100, now I'm down to 9.
I was concerned if I had radiation treatment that it would kill my hearing nerve, and therefor I wouldn't be able to treat my tinnitus anymore with the hearing aid. This is valid concern, and a reason why some doctors won't treat you with radiation because they're fearing your tinnitus will fluctuate/increase and ruin your quality of life again - making you suicidal.
Most radiation treatments have hearing loss/SSD associated with them, and also increased tinnitus, as a side effect. Some doctors may refuse to treat you if they know you were previously suicidal because of your tinnitus. They may think your quality of life might fluctuate back to the point of being suicidal and so they may recommend microsurgery. Even if they've never spoken to you....just email communications.
Others doctors will evaluate the exact same info and decide your still an "excellent" candidate. Same information ...different opinions from doctors who perform same treatments.
Combine this with the fact my AN was a fast-growing "aggressive" tumor and some radiologists will certainly shy away from treating you. While on the other hand, some doctors will still say you're an "excellent" candidate.
I'll never know if it's more about protecting their excellent local statistical outcomes at their facility, or really for the greater "benefit of the patient" and for protecting my health, or a difference in personal politics.... or on the flip side if they're accepting just for the money. I like to believe most doctors have our best interest at heart (even though I've seen just the opposite with other family members dealing with doctors).
Anyhow, if one CK or Gamma Knife doctor says "No", I can simply go down the street to the next guy who will say "Yes". And they know this.
But is it the right thing to do?
It's such a frustrating position for a measly lay person to be in, not to mention dealing with a brain tumor.
Derek, I apologize for hijacking this thread. I guess I should have started a new topic. The bottom line is, like everyone else, each case is special. Mine shouldn't be used as a general example for all Acoustic Neuromas.
LisaM, it's interesting that you mentioned some of the top surgeons recommended surgery immediately, only to have your tumor not grow and shrink. In my family, our genes make everything in our body grow to the max. I'm 6'3 tall, 370lbs with size 16 shoes.
Lifestyle changes?
It's very difficult to make lifestyle changes when you're depressed and facing a brain tumor, plus a litany of other LIFE issues. I know I need to lose weight, but it's never easy, especially in Michigan weather.
I think it's best to treat it now before it gets too big and I won't be a candidate for radiation. But then again, even when my tumor is small, some radiation specialist still refuse to treat it. Go figure.
Perhaps I should have kept my mouth shut, and not have asked so many questions
Best wishes to everyone on their journey.
