I wanted to share my experience as I had an MRV and Doppler US at False Creek in early February.
A doctor met with me, and discussed my MS history. He then referred me for an MRV and an US. I returned the next day for my tests.
The doctor doing the US was very negative and skeptical of the whole CCSVI theory. He saw narrowing, but with a change of breathing called (valsalva) the narrowing got better. I said well, I don't live my life in valsalva --- he said I don't live my life with a balloon in my vein either. He found an irregular valve...and I asked him to do the test sitting up...(b/c he wasn't going to) as I sat up my left jugular remained dilated and full of blood (it should empty and be flat when sitting) I said to him...Don't you think that could indicate a bottleneck? He was cynical and said we will wait for the MRV.
I had the MRV and then waited days for the results.
I am a chiropractor, and am experienced in looking at MRI's and US, so when I got home I looked at all of my tests. I found an image on my MRV which shows obvious stenosis in my left jugular, and it matches where the dilation was found on the US.
HERE IS THE THING....NO ONE at False Creek looked at the two tests together...So the Doc that ordered the tests...simply acted to give the req out so they could make their money...but he never interpreted the two test results. No one did. I DID....
So I called the radiologist himself and i discussed the MRV. I emailed him the image I was concerned about. He told me that he does not have access to my US, so he can not comment on the collaboration of the 2 tests...I am thinking WTF? and What is the point?
I saw my neurologist here in Ontario, and he was miffed that I had to interpret my own results.
The test reports simply commented on what what was seen but HEAR ME....EACH ABNORMALITY WAS SAID THAT IT COULD BE AN ARTIFACT OR POSSIBLY A SIGN OF STENOSIS. ANOMALY????
So when i get home to all my doctors...they all say well, it could be an anomaly...it is too soon in all the research...
THE RADIOLOGIST TOLD ME THEY HAVE TO BE CAREFUL WITH THEIR CONCLUSIONS AND IT IS TOO SOON IN THE RESEARCH STAGE TO COMMIT TO NOTICING STENOSIS.
DO NOT WASTE YOU $2000 AS I DID. THEY ARE IN IT FOR THE $$$$ RIGHT NOW, AND UNTIL THEY GET THEIR ACT TOGETHER...I WOULD WAIT, AND WISH I HAD.
I FOUND ABNORMALITIES THAT THEY DID NOT COMMENT ON....
Ok, So read on, I contacted the medical director of False Creek, and expressed my thoughts. He has been very courteous and professional about my feelings and about my experience. I will let you know how it plays out.
Last edited by chiromom1
on Sat Mar 06, 2010 5:16 pm, edited 1 time in total.