trust my results?

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

trust my results?

Postby chachacha » Sun Jan 24, 2010 9:10 pm

After my last MRI showed five active lesions, my neurologist asked 'would you like to have your veins tested?'. I said 'sure!'. She assured me that the protocol had been given to the techs, but that I would be the second person at that facility to be tested (one of the mayo clinics).

When I got there, the person actually doing the test said she had kind of heard of CCSVI but really didn't know what it was about. She was told where to test by the person who was going to read the test. I tried to explain that she might be looking for some sort of reflux. She said she did ultrasounds all the time on the jugular veins and that there was really only one certain way to do them. We did one test laying down on the right side. Then one sitting up on the right side, then left side. Then I laid back down and she did one more test on the left side. Is that the right way?

I did not meet the person who read the ultrasound and I cannot attest to their knowledge of CCSVI or the protocols other than they were given some sort of instructions on a 'protocol'.

My test was negative. How much faith should I put in that diagnosis? Is it possible that the test was done right, but the person reading the results might have gotten it wrong? Should I get a copy of the test to have someone else look at it? I did ask for an MRV, but was told that it'd be too hard to justify to insurance.

Edit to add: I have RRMS. Currently seventeen lesions, five active.
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Postby LR1234 » Mon Jan 25, 2010 3:41 am

I think doing the doppler test specifically looking for CCSVI is a very specialist thing. I had a doppler in the UK that came back negative, I then went to Dr Simka and he found a problem with my left vein. I then had the venogram which confirmed the problem and have the proof of the movies on CD! so I know for sure that the first doppler was not correct.

I would not worry too much about it and see if you can get tested by someone who has been trained to look for CCSVI.
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Postby AJWANTSACURE » Mon Jan 25, 2010 5:59 am

dont be discouraged! i've had 2 dopplar scans done - 1 of neck and 1 transcranial color ddopplar. both came back negative BUT the tech has to know whaat they are looking for.

over thge weeken i posted about a VENOGRAPHY andd last week i postedd about a CT-Scan. read those threads they may help you out a bit

Good Luck.......AJ
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Postby Billmeik » Mon Jan 25, 2010 4:59 pm

I find this problem very interesting. How can techs trained in standard procedures not find the ccsvi?

It seems like almost every person who successfully found their ccsvi, before that, they had a negative test.


Gotta understand the imaging better.
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Postby Billmeik » Mon Jan 25, 2010 5:00 pm

duplicate
Last edited by Billmeik on Tue Jan 26, 2010 1:16 pm, edited 2 times in total.
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Postby sou » Mon Jan 25, 2010 5:32 pm

This is not a standard procedure at all... Only very experienced people may understand how to read the data acquired.

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Postby Squeakycat » Mon Jan 25, 2010 10:52 pm

Chachacha--


Peter Gloviczki, MD at Mayo Rochester is one of the authors, along with Dr. Zamboni, of the consensus document on the diagnosis and treatment of venous malformations of the International uni0n of Phlebology. I have not looked at the document. The title is not CCSVI specific, though I was led to the document in that context so I "assume" that it is related.

Here is his contract info. If he wasn't the one reading your u/s, maybe you can see if he would given the collaborative nature of Mayo.

Division of Vascular and Endovascular Surgery, Department of Surgery, Mayo Clinic College of Medicine, Director, Gonda Vascular Center, Mayo Clinic, Rochester, MN, USA;

The Mayo Clinic Gonda Vascular Center is devoted to providing state-of-the-art diagnosis and treatment in a compassionate environment for patients with vascular diseases.

gloviczki.peter@mayo.edu

507-284-2511
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