CureIous wrote:There are people who have been mis diagnosed with the catheter veno, there have been people who have been negative until investigated via ivus. The "gold standard" is just a cute name, it's not God. It should be called "one of the gold standards" or something to the effect that it doesn't necessarily slam the door shut when negative.
gothicrosie wrote:CureIous wrote:There are people who have been mis diagnosed with the catheter veno, there have been people who have been negative until investigated via ivus. The "gold standard" is just a cute name, it's not God. It should be called "one of the gold standards" or something to the effect that it doesn't necessarily slam the door shut when negative.
Interesting. I have not heard about others' negative by catheter venography and I have also not heard that the intravenous ultrasound catheter is better.
Granted, I have just been going by what folks like Dr. Scalfani and others have been saying. Dr. Scalfani has also called the catheter venography as the "gold standard", heck, I think the IR website calls it that. But I agree there is no one test for this and a combination is the best way to determine the truth.
I don't even fully trust my single MRV. I will see if I can find the truth when I visit my first IR this coming Thursday...only time and more tests will tell for sure.
gothicrosie wrote:What makes you feel that test was negative?
adamt wrote:thank you very much for the replies,
i was on an operating table with a catheter inserted in my groin, it was definitly a catheter venogram
i was negative after a catheter/dye veno, but i showed dr sclafani my images and he said my 'narrowings are consistant with CCSVI, and that he didnt agree with my doctors diagnoses.
before the procedure i spoke to the dr about zamboni and she said she doesnt follow his protocols.
the new dr said he will be following dr Hacke's protocol in the MRV.
Is this ok? or shall i show him something else?
gothicrosie wrote:Just thought I'd report Dr. Sclafani's answer to the question regarding diagnosing options:
"the catheter venogram is the gold standard NOT the diamond or platinum standard, meaning things can be missed. Intravenous Ultrasound (IVUS) and other tests can augment the findings of catheter venography. Also, IVUS is rarely used. It is expensive. I found it immensely useful to better understand ccsvi anatomay and to detect abnormalities that cannot be picked up by catheter venography."
This means there are a number of options out there to diagnose (MRV, venogram, doppler, IVUS) and a number of options to misdiagnose.
There are no absolutes here, we are on the bleeding edge of innovation and discovery with CCSVI.
Patience, understanding, and a willingness to try many different types of tests to find the truth are required.
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