RESEARCH Story Concerned

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

RESEARCH Story Concerned

Postby mohzi » Sun Apr 11, 2010 3:18 pm

Last week I had a lengthy conversation with a major MS research center here in the US, The person I spoke with is directly involved in CCSVI research.

They found major stenosis in a MS patient, then scheduled the person for surgery. The surgery was scheduled weeks later. Right before they surgery they did all the scans again using all the proper protocols, plus additional methods. These people know what they are doing.

The second scan done right before surgery showed no stenosis. They are bewildered by this and have told me this brings up a lot more questions about the stenosis being found.

Has anyone heard this or familiar with it?
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Postby Lyon » Sun Apr 11, 2010 3:43 pm

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Last edited by Lyon on Mon Nov 21, 2011 5:38 pm, edited 1 time in total.
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Postby joanp » Sun Apr 11, 2010 4:20 pm

I have heard of at least two separate cases where this occurred. More will likely pop up as more testing is done.
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Re: RESEARCH Story Concerned

Postby euphoniaa » Sun Apr 11, 2010 4:51 pm

mohzi wrote:Last week I had a lengthy conversation with a major MS research center here in the US, The person I spoke with is directly involved in CCSVI research.

They found major stenosis in a MS patient, then scheduled the person for surgery. The surgery was scheduled weeks later. Right before they surgery they did all the scans again using all the proper protocols, plus additional methods. These people know what they are doing.

The second scan done right before surgery showed no stenosis. They are bewildered by this and have told me this brings up a lot more questions about the stenosis being found.

Has anyone heard this or familiar with it?


Try this thread.
http://www.thisisms.com/ftopict-10619.html
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Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)
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Postby Liber8 » Mon Apr 12, 2010 7:00 am

I would ask them to use Venography. I gues I don't understand why an IR would have the scan a second time when indication was there the first time. The norm is that if there is enough stenosis on the non-invasive scanning they either go in then with the catheter or set it up in the near future for it. Only thing that I can think is that either the first or second IR didn't know what they were doing, valitity of the story, or he/she(IR) needed an easy out.
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second testing

Postby mohzi » Mon Apr 12, 2010 11:52 am

They did this as a research protocol. The Interventional Radiologist is well trained and knew what he is doing. Now they are trying to figure out why.
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