You are right, Mike-most people know nothing about benign tumors in the head until they get one. And then, I think most folks are terrified.
Thank God I found this forum. Because I was so upset about my diagnosis, I e-mailed the NYC ENT who had seen me and analyzed my MRI, and I asked him if there were support groups for people like me and he wrote back Sure! ANAUSA. So I googled around and found sorely needed respite.
The other ENT I saw made no mention of the ANA although he said I might speak with a neurosurgeon since I was so troubled by my diagnosis. (He told me, this second ENT, that I had the luxury of time, it was only 1.2cm by .8 x.5) The neurosurgeon said if I were his wife, he would tell her to watch and wait. (He didn't mention ANA either.) Their matter of factness calmed me down, but symptoms may get worse, and when they do, we are alone or going about daily life and it's definitely different! It can be very hard.
One way to publicize this condition might be to ask hospitals who advertise their stereotactic radiosurgery in TV commercials to attach a brief paragraph/voiceover with "Donate to the Acoutic Neuroma Association today! End the fear of tumor diagnosis!" or something like that. The hospital could probably get a tax break too. Just a thought.
Hmmm. Have I paid my dues to the ANA?