ccsvi.ca

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

ccsvi.ca

Postby Cece » Fri Apr 15, 2011 1:13 pm

Maybe I shouldn't be reading ccsvi.ca. I am in disagreement about many things that I am reading.

Here's one, from the faq:
Venous angioplasty is rarely used because the incidence of re-stenosis is so high. This is because narrowed veins are usually scarred, and the scar tissue is very elastic. So, if a narrowed vein is treated by balloon venoplasty, it is like stretching an elastic; remove the balloon from the vein and its elastic properties make it return to its original shape.

Here is a more trusted source, Dr. Sclafani, stating that the narrowings above the valve do not seem to him to be scar tissue:
www.thisisms.com/ftopicp-159605.html#159605
drsclafani wrote:cece
just because you think that the narrowing is scar tissue, doesnt mean it is. In fact, i do not think it is when the narrowing is in the vicinity of the valves.
i was just making the statement that most IRs believe it is scar until proven otherwise and thus are over dilating.

I think it is not and have backed off on sizeing balloons to conform to the diameter of the vein to start.
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Postby 1eye » Fri Apr 15, 2011 1:17 pm

You forgot one thing. They'd have to look.
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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Postby Cece » Fri Apr 15, 2011 1:26 pm

lol, 1eye, I edited out my suggestion that the MS Society be given an IVUS, I figured I was being too snarky. :)

Why are you not posting a list of clinics where the CCSVI procedure is available?
There is currently no standardized protocol for CCSVI testing or treatment and clinics offering the service are appearing all over the world. Because the procedure is still considered experimental and because we do not have specific information about each clinic, its staff, and practices etc., we cannot responsibly list these sites.

One thing I've noticed from my recent project of reading every Canadian article on patients who've received the procedure (see: improvement reports thread) is that even though there is availability in the US now, this is not universally known. I wrote about a patient who, in December, flew all the way to India despite advanced MS. She needed a caregiver to hold her head on the plane, it was all at great expense and effort, and then her veins restenosed.

It is one thing if a patient or her caregivers have weighed all the options, including CA, NY, MN, GA, FL, NH, and are still choosing to pay triple the price and go to India. It's more likely, however, that they did not know there were cheaper, closer options. CCSVI.ca could help by listing the options.
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