I finally made it down to the coast for my consultation regarding my MRV from the CCSVI study I participated in the end of 2010.
The Dr I met with is highly qualified. He chaired the ISNVD meetings held in Buffalo this Feb in which the standards for assessing CCSVI were agreed upon.
The study I was in was apparently "a poor quality study, with no post contrast or routine MS sequences performed to make it useful for MS assessment of active denyelinating disease."
"Jugular venogram demonstrates suspicious features for CCSVI, however without proper flow quantification"
"The jugular venogram demonstrated appearance of a valve at the left junction with the subclavian vein. Unfortunately focal ossification cannot be analyzed to determine the impact on the jugular venous flow. On the right, there appears to be smooth tapering of the distal right jugular vein, a 10 flow quantification cannot be adequately assessed. There is a minimal collateralization of the cardinal, and paraspinal veins, which is only one of multiple MRI criteria designed by the ISNVD to assess for CCSVI. Thus interpretation for CCSVI cannot be performed."
So, with the limited images he had to work with, the Dr said it would appear that I do have CCSVI based on the jugular venogram. If they had done the flow quantification he would be able to determine the extent of CCSVI, but as it stands, he can only say there are suspect areas.
He recommended I not persue treatment at this time due to the fact I am fairly stable for now, and my Neuro thinks the DMD is helping me. He (Dr A, not my neuro) said if I took a turn for the worst and wanted to get the angioplasty done, any good Dr in the field could work with the MRV images I have, and not to get more imaging done.
Long story short, the imaging, etc does not meet the current standards for determining CCSVI, but there is enough info on my disk for it to be useful for an unoficial DX of CCSVI, or at least enough info so that they would not need to scan before performing the angioplasty.
My decision is to do exactly what the good Doc recomended. I'll wait. Maybe the ongoing studies will shed more light on this subject. Maybe the political stance on CCSVI in Canada will change, and MSer's will have the option to pursue treatment in Canada.