I was diagnosed in August this year after a sudden onset of symptoms that greatly affected balance. There was also a hearing decrease that was worsened by allergies, and about two weeks later, some facial asymmetry that suggested facial nerve involvement. A round of steroids cleared most symptoms. The balance loss was striking as I felt like I had been at happy hour for 8 hours. It was almost impossible to go to work. After being diagnosed, the hard part started--deciding how to be treated and where. Being a professor at a medical school, I know how to use the literature (Pubmed) and eventually found this site, which is a must for anyone with these tumors. I wanted nothing to do with surgery and in fact, considering you will likely lose your hearing, and that it is major surgery, I'm surprised that radiation is not the standard of care. It's about a 6 hour treatment as an outpatient with very high success rate. Yes, it can fail, but then you havethe surgery, though it is a little more complicated then. However, my thinking was that who knows how advanced treament will be in 5-10 years.
I gradually identified all the best places, Stanford for Cyberknife and Pittsburgh for Gamma knife, and then started reading clinical studies. Getting multiple opinions, as this site suggests, is a must. I visited Stanford (they don't do the phone consult anymore apparently), and they were great. I sent images to Lunsford as well, he sent a standard letter back. I also met with a neurosurgeon just to touch all bases, and no one thought surgery was a good idea. As I read more, and after talking to my neurosurgeon, I thought gamma knife was the best route as you do not want to mess with the facial nerve (see other areas of this site), and gamma knife has great outcomes for facial nerve involvement. My surgeon had trained with Dr. Sheehan at UVA, so I figured I'd get a second opinion on gamma knife since I made up my mind I would have this method. I emailed Dr. Sheehan, and he emailed back right away. We corresponded for the next few weeks and he always responded promptly and thoroughly. He was trained by Lunsford and UVA was #6 in getting their instrument in the US, so I decided on Sheehan. He is an MD-PhD, and like Lunsford, publishes often on AN's. UVA, like a number of places also has an active acoustic neuroma group, so I was confident they would be good. Interestingly, I had a bunch of doctors at UVA and they were all MD-PhD's, quite an impressive program.
The UVA staff were excellent and shaved a day off my visit. I flew in Tuesday night, had an MRI the next day (large bore 3 Tesla, with the automatic contrast injector, so you don't come out), and procedure the day after. We reviewed the tumor, which was on the small side, of around 1.6 cm, and the calculated treatment was 33 minutes--about 10 songs on Pandora. The headframe gets put on like a pit stop at Indy--I had 5 people, and they were done in about 3 minutes. I was awake the whole time and remember everything. Probably a little to light on the anesthesia. In fact, the frame was quite uncomfortable. They think one of the pins was near a blood vessel, which draws away the local faster, so it actually hurt, even with an extra shot of fentnyl. But I got through it fine. When they took the frame off, if felt like the rush of endorphins right after setting a broken arm. Lots of cringing. However, day 2 post treatment, I have yet to take a tylenol and have no pain killer prescription. Going through this site, I know what to expect in the coming months and now will just be waiting it out until my next MRI.
