Posted: Tue Nov 24, 2009 11:30 pm
Marie, not to be picky, but the only radiologist that saw no stenosis was the Dr. at the hospital where I had my CT venogram done, who had no idea what he was looking for.mrhodes40 wrote:I want to add to this thread reference to the difficulty Marc had with the interpretation of his scans
see this topic http://www.thisisms.com/ftopict-8876.html
He had actual venous scans that a radiologist said were normal, a second friend radiologist said normal, Dr Dake said stenosis left and right jugs, then the NIH agreed there is stenosis high in the left jug, but not the right.
With regards to the difference over the right, I want to add to that that these scans done ahead of time are not definitive--it is not that a person would get necessarily a stent in both the left and the right just because a scan ahead of time looked stenosed--- the first thing they do in the cath lab is a venogram and they get better pictures of anything they saw ahead of time on scans and then they decide what actually needs to be repaired and how.
The scans ahead of time are to see IF you get the venogram....the venogram is to see IF you get a balloon or stent.
I happen to know too that Island Girl had a questionable looking spot on the scans ahead of time (MRV MRI in her case) and when they went in with venogram they decided it was not something that needed repair and they pulled the venogram catheter out without doing any balloons or stents or anything.
But I wanted to point out that fairly sophisticated scans were done for Marc and there was considerable disagreement about what they meant. If I understood it correctly the NIH knew that Dr Dake already had said that there was a stenosis on the jugs so they knew specifically to look for it.
I wonder Marc if the other docs knew what Dr Dake thought he was seeing as well or if they knew what the CCSVI idea would be and thus had an idea of what to look for?
This is an issue for all of us.
Dr. Dake was the next to give an opinion, and he told me over the phone that he saw "pancacking" of both upper internal jugulars.
The family friend, who is the head radiologist at Winthrop Hospital here in New York, read the venogram while I was on the phone with him. He was aware of the discrepancy between what the original radiologist reported, and what Dr. Dake saw. He was very surprised to find that my left internal jugular was indeed stenotic, but said that the right jugular was normal.
The the NIH radiologists concurred with this last opinion, that there was stenosis in my left jugular, but not in my right.
I can easily discount the report of the radiologist at the hospital who first looked at my CT scan. I'm sure he looked at it for a total of 30 seconds, and then moved on to the next scan. The family friend radiologist remarked that the stenosis was in an area that he normally wouldn't examine, and that could easily be missed.
This illustrates your point that the physicians reading our scans need to be aware of just what they should be looking for...