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Haven't slowed down since
Dina's Story

My initial symptoms included fullness in the ear and tinnitus - no headaches, no balance problems. They appeared in Dec. 1992, and went away in February, or perhaps I adjusted to them...  It happened so abruptly that  I was sure whatever I had went away and they would not find anything - imagine my surpise in March at the diagnosis of a 12 mm AN!

After the diagnosis, I was sent to surgeons of course, both for the first and second opinion. I insisted on seeing Dr. Ojemann, the former medical head of the ANA, for the second opinion. That was in May 1993,  before I knew much about ANs, but I did know they are benign, so when he tried penciling me in for surgery, I twisted his arm to admit that I could afford to wait - that took guts, I know most patients would not have dared.

Then, I was in the wait-and-watch mode for over 2 years, doing a lot of research, while the tumor kept growing. It went from 1.2  to 2.5 cm, speeding up along the way (though I remained asymptomatic). Eventually, I drew the line and had FSR. Now it's down to 1.9 cm.

I traveled a long road before I discovered FSR. This was all in the pre-web days, and finding things out was much tougher. I went to the medical library, corresponded with Sweden, called centers around the US, got in touch with other patients. I was ready to fly to Sweden for GK, that's before I knew it was available here. Then I was ready to fly to Pittsburgh, and then I finally found the center in RI, which would have been my GK choice, and just 10 minutes from where I worked.

Then on a visit to my surgeon, I stumbled across Dr. Loeffler, one of FSR pioneers, since he was doing his work at the same hospital. I decided that fractionated stereotactic radiotherapy (FSR) was even better than GK, and having my HMO cover it without a fight sealed it.

My AN was treated with when it reached 2.5 cm, in August 1995. I felt a little tired towards the end of treatment (30 15-min sessions,  too many perhaps), if you can call this a complication. I did not miss a day of work, though. The evening of my last treatment session, I flew to Europe for a workshop. Two days later, I was hiking in the Alps... Haven't slowed down since.

Unfortunately, 3 months after the treatment, my hearing (which miraculously had remained almost perfect, despite tumor size) started going, and has officially stabilized at "moderate hearing loss", between "mild" and "severe". This apparently happens to 25% of FSR patients, so I am not considered an FSR "success story", even though the experience has been superior to even the most successful AN surgery story.

Dina Q Goldin <dqg AT aya.yale.edu>
Boston, MA
June 1997

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Last Edited: Wednesday, October 30, 2002