Just a little note of frustration. I have found a wonderful vascular surgeon here in the UK who just by chance was at the conference Zamboni spoke at originally. She has been incredibly supportive and helpful, to the extent she managed to get a friend at our a local NHS hospital interested enough to want to try and replicate what was found on my original doppler.
The original doppler I had done at U.Dimensions in Ireland and the lady found that my left IJV didn't collapse as it should while elevated, that was all, but it was deemed enough to indicate CCSVI.
So this morning we agreed that the lady today wasn't trained to exact procedure, but let's face it, telling whether a jug is open or collapsed on a doppler is as evident as anything. She had wonderfully spent a long time reading notes on protocol, did a few scans of neck veins on normal patients (bless her!), studied my original images and report. And c'est la vie, my left IJV was fine, and collapsed as it should
Can anyone help explain why this conflict should be? We both agreed that both scans were done correctly and were utterly valid. Though why the difference on 2 days weeks apart, she said she couldn't explain why on earth it would be.
Now I know dopplers aren't the finest diagnostic tool but I just felt a little frustrated and foiled! I had hoped that if it was replicated the lady might well have become interested enough to follow things up and maybe train to do the scans. Knowing how hard it is to find people to even open their minds in the UK, i'm sure you'll understand how much even a small step forward means! Now I feel that it's very unlikely.
One step forward, two steps back I guess, just a little disappointing.
Though I am eternally grateful and impressed by both my vascular surgeon and the lady who did the scan for having an open mind and being willing to try and help the cause in the first instance.
28/07/10, 04/10/10, 16/11/10 - CCSVi Dopplers x3 ** 12/10/10 - Poland procedure. Symptoms worsened. No improvement.
13/02/12 - Wheldon ABX protocol for 1.5yrs. Fairly stable but no improvement. Unable to source alternate ABX needed.