"It's not like you have a brain tumor..."

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February 12, 2016 - Santa Clara, California

I remember consulting my general practitioner in 1996 and having him say, "It's not like you have a brain tumor,". As it turned out, I did. After my first few surgeries, I heard someone say "VHL". What is this? A specialist actually told me that I have VHL (von Hippel-Lindau Disorder). VHLers, a fairly rare bunch, develop hemangioblastomas in their cerebellum. I have had a few such tumors surgically removed, and perhaps a record number treated with stereotactic radiosurgery. VHL has other complications, but most of these have eluded me, so far. I did a lot of reading about VHL, and learned of the VHL family alliance based in Brookline, MA. I made some contacts with the family alliance and these people gave counseling and suggestions that were helpful. Since my diagnosis, I have been going through a rigorous screening process that includes brain MRIs ever six months, with contrast studies. Sometimes these tests wear on me, but they help me keep my disorder under management.