Life with MS & EDS

February 10, 2010

Press Release from Buffalo re CCSVI Study

Filed under: Uncategorized — by mseds @ 1:43 pm
Tags: , , ,

The University of Buffalo issued a press release regarding the results of their first CCSVI study.  The Combined Transcranial and Extracranial Venous Doppler Evaluation (CTEVD) study included 280 MS patients (mostly with RRMS) and 161 healthy controls.  The results indicate that more than 55 percent of the MS patients had blockages in their extracranial veins, disrupting the normal flow of blood from the brain.  Interestingly, 22.4 percent of the healthy controls also demonstrated blockages.

“When the 10.2 percent of subjects in which results were border line were excluded, the percentage of affected MS patients rose to 62.5 percent, preliminary results show, compared to 25.9 percent of healthy controls.”

Robert Zivadinov, MD, PhD, University of Buffalo associate professor of neurology and principal investigator on the study stated, “The data encourage us to continue on the same course.  They show that narrowing of the extracranial veins, at the very least, is an important association in multiple sclerosis. We will know more when the MRI and other data collected in the CTEVD study are available.”

Complete data will be reported in April at the American Academy of Neurology.



  1. I got the newsletter, too and I was so happy to see that the results are definiteley pointing toward this procedure eventually being able to help so many people. I am on the list too, and I hope I get called to get tested. Self referral is expensive!

    Comment by karen — February 10, 2010 @ 7:18 pm

  2. Good luck! I hope someone I know gets into the study. I signed up through the self-referral, but it is crazy expensive. I really want to know though and with the study, they don’t tell you. I hope their research will lead to more people doing the tests or to health insurance companies covering the tests. I like the idea of doing it there because they know what they are doing and have the right equipment. Maybe others will follow suit soon!!

    Comment by mseds — February 10, 2010 @ 7:24 pm

  3. I thought they do tell you, in the study. Darn I better read it over again.

    Comment by karen — February 13, 2010 @ 10:43 am

  4. In the study they won’t tell you if your veins are blocked, nor will they tell your doctor. They will give you the MRI results, but I think that’s about it. It’s too bad they aren’t telling people, but I guess I understand it from the perspective of potential future research.

    Comment by mseds — February 13, 2010 @ 10:58 am

  5. Okay. Yes and I just had an MRI about a month ago, and there are no new lesions, and the one lesion that was always there is barely detectable, and the second lesion is not detectable. But they also didn’t find any cause for the headaches and neckaches. I have a lot of inflammation with an occiptal nerve on the left side. Pluse, my neck pops in and out on its own all the time, as do my shoulders(curses!) and so I understand there is so much that could contribute to the pain. But the vascular angle is one I just know I need to pursue.

    How cool would it be if we both got selected to go to Buffalo at the same time? Let’s make it a tentative “date” LOL. Hang in there. As am I.

    Comment by karen — February 15, 2010 @ 1:13 pm

  6. Karen – It’s great to hear you had fantastic MRI results! Sorry to hear they couldn’t pinpoint the cause of the pains. I imagine things popping in and out on their own could be part of the problem!!

    It would be awesome if we both got into the study at the same time. I’d love to meet you in person!

    Comment by mseds — February 16, 2010 @ 8:51 am

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