The Veins in CCSVI- from Dr. Simka

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

Postby cheerleader » Thu Jun 24, 2010 8:26 am

Facts to understand about May-Thurner:

Many people with this condition remain undiagnosed, because the signs of this venous abnormality don't usually show up until there is a deep vein thrombosis and some serious complications. But dvts don't always develop. General signs of this venous insufficiency include leg pain, swelling and edema, varicose veins, loss of hair on legs, petechiae, and venous ulcers.

Remember going back to Dr. Zamboni's very first paper on the link between CVI in the legs and CCSVI in the central nervous system:

And it was Jeff's petechiae on his legs...those little red dots on his shins and ankles that presented with his first MS flare. This is why I went down the blood path. And he still hasn't been checked for May Thurner, because his angioplasties went in thru the right side. Something to look at next trip to Stanford, perhaps...

The doctors are learning more every day. This research is fluid and in real time, and yes, it is patient and caregiver driven. Because time is of the essence. And there is a connection.
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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
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right entry not all bad

Postby hwebb » Thu Jun 24, 2010 1:49 pm


my IR has treated May-Thurner Syndrome for years (well, decades actually). He says you can check for it from the right side also. I haven't asked if it can be treated from the right side, but it can be imaged from the right side.

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Postby thisisalex » Thu Jun 24, 2010 3:14 pm

and again a new piece of the puzzle
i always got swollen legs
now i know

thanks Cheer
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be careful about drawing conclusions

Postby hwebb » Thu Jun 24, 2010 4:41 pm

swollen legs do not always mean May-Thurner syndrome. Just ask Brainteaser. He had his jugulars treated...and his legs stopped swelling (until restonosis). Of course, a venogram of this area will reveal all.
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Postby Cece » Thu Jun 24, 2010 4:53 pm

Inclined Bed therapy has helped with my swelling.

I am trying to imagine how blocked jugulars would've caused swollen legs...could it be the overall low blood pressure or flow, so that blockage in the one part of the body slows it down all over?

Dr. Sclafani has posted in his thread today that Zamboni has looked at this in over a hundred patients and found MT syndrome in only 3. He says he does not believe that there is an association. The significance of MT syndrome is that if you happen to have it as well, the blood is rerouted to veins that might be blocked from ccsvi and then the spinal column is affected.
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