Twindy, we've all been where you are, so we certainly understand.
When I was diagnosed, it was a shock just as it was for you. The ENT who diagnosed me was someone I'd never seen before, and he told me that, while he performed this surgery for a living, he would not touch me because my case was "too delicate." My family doc always referred me back to the ENT who did not want to talk to me. Everyone I talked to--and I talked to lots of people--had a different opinion. One day I met a man who had brain tumors (I don't know what kind) and had had CK or GK--I forget which. He was miserable. He said they'd given him too much radiation and his brain was "cooked," that pieces of it were flaking off and clogging his spinal cord. He said he's had to have three surgeries to clear it so far.
After that talk and reading all the (old, but I didn't realize it at the time) horror stories about surgical options, I decided the tumors were my friends and that I would keep them.
Luckily, my sister is a very experienced nurse used to dealing with neurosurgery, and she put her foot down. She found the study at the National Institutes of Health, and I called and talked to the head surgeon. I told him the trouble I was having making a decision, and he told me that, since he was a neurosurgeon, he recommended surgery. He said he had research supporting his position, and that if I was interested, he'd send it to me. But he also pointed out that, if he were a radiologist, he'd recommend radio-surgery, and he'd also have research he could send me.
That honesty made me trust him, not something I do easily where doctors are concerned. He sent me the research, and I looked over it. What he sent was valid, credible material that looked fairly at both sides of the issue. So I decided to go in for testing, but I still hadn't made a firm decision.
When I got there and had the MRI, he told me the decision had basically been made for me. The tumor was cystic and growing rapidly; it had to come out right away. There was no choice in surgical approach because the tumor had gotten so big, and CK was no longer an option because results didn't occur fast enough. My only options were to choose the surgery and live (probably) or choose not to have the surgery and die in two to three months.
When he put it like that, the decision became surprisingly easy
