Corelation between lesions and type of CCSVI defect

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

Postby whyRwehere » Wed Mar 17, 2010 8:06 am

That's right CN,
So, since one of my husband's problems was missing veins in the pelvis...perhaps there is something else there?...
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Postby costumenastional » Wed Mar 17, 2010 8:24 am

I know about your husband friend. And i think that missing veins should be quite catastrofic on their own for someone to look even further.
And you can be happy that he was not on drugs all these years...
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Postby mshusband » Wed Mar 17, 2010 12:11 pm

OK ... so here's one for you then ...

Let's say you're missing (OR BETTER YET - HAVE STENOSIS IN) veins in your legs. As you all are suggesting, one vein affects flow to all parts of the body.

I believe Dr. Sclafani has mentioned people having vein issues in their legs.

You all postulate lesions could only occur above stenosis level - which if in the legs there was stenosis, could affect everything above it (and as a result of your talking ... affect flow to the brain and spinal cord).

This could mean lesions could occur anywhere.

Yes?

Sometimes i think we'd be better off not speculating and - actually asking and hearing REAL answers from a doctor. I know everyone wants to be an expert - but think about it ...

until about a year ago none of you had heard of CCSVI, and thought MS was an autoimmune disease, and I'm sure back then considered yourself as well versed as your neuros ... and now (IN 1 YEAR) you're all as well versed as a cardiologist/radiologist/etc? REALLY???

Maybe you'd all just be better off to stop hypothesizing and let MDs do their thing and figure this out. We'll all have answers some day ... some of this guessing and misinformation is a little frustrating to sift through at times though ...

Sorry I don't know what got into me on the second part of this post - since the first was the point I really wanted to make.
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Postby whyRwehere » Wed Mar 17, 2010 1:32 pm

huh?
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Postby suze » Wed Mar 17, 2010 7:39 pm

I wasn't aware that blood flow through veins in the legs had any effect on blood flow in the head and spine.
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Postby costumenastional » Thu Mar 18, 2010 12:06 am

Mshusband, we are not expterts whatsoever, you are right. But leg veins have nothing to do with CNS blood flow and MS lesions.
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Postby whyRwehere » Thu Mar 18, 2010 12:55 am

I am not sure what that person was trying to say, actually, except that we aren't experts and they are tired of where our minds wander....I don't understand if they think or don't think problems elsewhere in the venous system play a roll. But, in any case, we can wonder to our hearts content, because that is called "using our noodle"...blah blah blah.
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Postby suze » Thu Mar 18, 2010 3:43 am

As I see it as medical consumers, we have a choice. We can passively sit while doctors make all the medical decisions for us, and without question take their advice. Or we can be empowered and informed about our own health. This involves doing our best to understand what is happening - an often difficult process of tossing ideas around, seeking information, hypothesising and speculating.
Personally I think that the latter choice is by far the best, and that it's good for people to be informed about their health. I like to think I'm an expert on my own body. Doctors are experts on all bodies.
With something new like CCSVI, some pwMS are trying to understand what's happening. Seems like a good idea to me.
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Postby whyRwehere » Thu Mar 18, 2010 4:18 am

yah, what Suze says. :P
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