2nd NIH Visit

I think I have finally recuperated from our recent cross country trip. We drove up to the Bay Area, left the kids with my grandparents, and then flew to Washington D.C. for my bi annual visit to NIH. I am participating in a study of NF2 by Dr. Asthagiri which involves me flying to NIH every 6 months for the next 5 years. On this visit I had MRIs as well as exams for swallowing, physiatry, and neuro ophthalmology. Everything went smoothly and the ASL interpreters helped tremendously, proving my studying has really paid off. On the final day of appointments Paul and I sat down with Dr. Asthagiri to go over my MRI reports. As usual I was tense and concerned, especially about the tumor in my lower lumbar which I had treated with Cyber Knife last July. It had been a small tumor low in my spine not causing any specific problems. However, I knew it would grow and have to one day be dealt with. If I didn't treat it with Cyber Knife then, I would be facing imminent surgery. I rolled the dice and went in for radio surgery. For several months all seemed fine, but then towards the end of the year I experienced some localized swelling and pain. This is normal and I tried to stay positive. I was unable to walk or bend at the waist, so my local GP worked with Dr. Adler at Stanford to get me on steroids for a week, which brought the swelling down temporarily. I was terrified that the damage was permanent, but over a few months the pain dissipated. So on this visit to NIH I was to be told whether the tumor had stabilized, shrunk, or grown. If it had grown it would need to come out surgically, which is pretty low on my list of things I want to do this summer!

So Dr. Asthagiri came in and told us that the tumor had indeed shrunk... from 1.4 to 1cm!!! That is a big change in less than a year! Paul and I are ecstatic of course. I avoided an entire surgery with an out patient, painless procedure. When I had the Cyber Knife treatment I took a nap, and went for a run right after, and now 10 months later the tumor is smaller! Cyber Knife is not a magical fix all for every person and tumor, otherwise all my NF2 friends would be having it. Everyone and every tumor is different, but for me, things could not have worked out better!

After our NIH visit we flew back to the San Francisco airport and drove home with the kids. We were so happy to be home, and at night I hugged my kids just a little bit tighter. We dodged a bullet, a tiny 1.4 cm bullet!