Sept 8, 2009 Bologna CCSVI conference- finalized notes

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

Postby cheerleader » Fri Feb 12, 2010 5:54 pm

happydance wrote:I just wanted to bump this up for all those who have not seen it. I've always wondered about the fibrotic changes Dr. Guilio Gabbiani was talking about. Could congential for some mean a birth defect, but for others it has to do with fibrotic changes causing the stenosis. Could this be why the worse the stenosis the worse the MS?

Just rambling. Any thoughts.

Hi Happy-
I still wonder about this very fact. I think you're right, for some it may be a congenital truncular venous malformation, for some it may be more of a fibrotic change- which could also be congenital. The change from collagen I and III happens in connective tissue disorders, such as Ehlers- Danlos, (which are congenital diseases with no known cures. )

A connective tissue disease is any disease that has the connective tissues of the body as a primary target of pathology. The connective tissues are the structural portions of our body that essentially hold the cells of the body together. These tissues form a framework, or matrix, for the body. The connective tissues are composed of two major structural protein molecules, collagen and elastin. There are many different types of collagen protein that vary in amount in each of the body's tissues. Elastin has the capability of stretching and returning to its original length -- like a spring or rubber band. Elastin is the major component of ligaments (tissues that attach bone to bone) and skin. In patients with connective tissue diseases, it is common for collagen and elastin to become injured by inflammation. Many connective tissue diseases feature abnormal immune system activity with inflammation in tissues as a result of an immune system that is directed against one's own body tissues (autoimmunity).

Diseases in which inflammation or weakness of collagen tends to occur are also referred to as collagen diseases. Collagen vascular disease is a somewhat antiquated term used to describe diseases of the connective tissues that typically include diseases which can be (but are not necessarily) associated with blood-vessel abnormalities. ... rticle.htm

I believe this is what my husband has, since his sister has a mild form of Ehlers Danlos, and he does not have any obvious sign of impingement (like a cyst or malformed valve) Dr. Dake says he just has bad veins. We're hoping the endothelial health program, along with exercise, lifestyle, diet and his new stents will keep the blood flowing and inflammation at bay. Time will tell.
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
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