NIH Results

Paul and I flew to NIH in Bethesda, MD so I could take part in the clinical study of NF2 being conducted by Dr. Asthagiri. My Nana flew in and spoiled my kids rotten, so I was able to focus completely on the trip. We left Sunday before sunrise and as the plane began it's descent into Maryland all we could see were golden leaves. I guess that is what Autumn is actually supposed to look like.

I had MRI's done by a high tech MRI, saw an ENT, a neuro opthalmologist, and finally on the last day sat with Dr. Asthagiri to go over my NF2 history. Luckily I had already emailed him a timeline, my memory is foggy, probably by choice at this point. The neuro opthalmologist saw what could be a tiny hamartoma in my right eye, we are going to watch it. The ENT thinks my choking episodes may be related to my reflux and recommended prilosec. The MRIs were incredibly clear, and Dr. Asthagiri was able to show me area by area how many tumors I have. I don't know if the MRIs were just more accurate, or if I have had growth everywhere, but everything seemed huge. My vestibular schwannoma which I have had treated with Gamma Knife are still stable, but the huge double blob at the top of my head made me cringe. Looking at my spine, I have a bunch of tiny, unassuming growths. The doctor assures me there is no need to worry. I know there is no point in correcting him, each of those tumors will grow. I know full well as of today I am just fine, it is the future those tiny tumors represent which I fear. At the very top of my spine, maybe even near my brainstem, was also a small tumor deep inside. This was my first introduction to this particular tumor, and my stomach twisted even as I smiled and nodded politely at the doctor. The lumbar tumor I had treated with Cyberknife looks larger now rather than smaller, but that could be from swelling. I've had cramping and pain, but attributed it to... I don't know... running 26.2 miles? So we will wait 6 months and reevaluate that tumor, if it continues to grow, I am looking at yet another spine surgery.

There is nothing I can do right now, or any decisions to be made. Like most people with NF2 all I can do it wait, and try to keep looking ahead. I can't crawl under the covers, I just have to shake it off and keep running.