Just to review, the report that came with my CT scan said that everything was "within normal ranges". Doctor Dake reported over the phone that he saw rather severe occlusions (pancaking) in both upper jugulars. I asked him to send me a written account of his impressions, and received the following:
I reviewed the CD of your CT scan of the neck from July 23, 2009. The images show a dominant right jugular system with bilateral narrowing of both jugular veins at the C1-C2 level adjacent to the base of the skull. The narrowing on the left is more severe. These findings are consistent with the degree and location of jugular vein narrowing noted in other individuals with MS.
My dad is friends with the head of radiology at a hospital on Long Island (Winthrop Hospital), and he read my CT venography scans, specifically looking at the upper jugs. He said that there was a significant narrowing of my left upper jugular, but that the right appeared normal. He told me that the narrowing in the axial scans appeared striking, but was much less so on the sagittal scans. Still, he said, this was definitely an odd finding.
He also commented that if he weren't looking specifically for such abnormalities, he would never have seen them. A typical radiologist looking at a scan of the neck would very likely miss such narrowing.
He did find the research I forwarded to him very interesting, and thought that the theory definitely warranted further investigation.
I'm off to the NIH tomorrow, to be seen by the government doctors on Thursday for yet another full day of poking, prodding, scanning, and examinations. Along the way I'm supposed to spend some time with one of their radiologists looking at the CT scan.
I'll report back when I return...