Chronic Cerebrospinal Venous Insufficiency (CCSVI)-

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

Postby Cece » Mon May 23, 2011 12:22 pm

Welcome, emholtzman26! Will you be able to attend the CCSVI patient day? Dr. Sclafani, who posts here, is the one who pulled this together as well as the two days for the doctors immediately following our patient day.
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Re: Chronic Cerebrospinal Venous Insufficiency (CCSVI)-

Postby cheerleader » Mon Dec 12, 2011 1:29 pm

HAPPY THREE YEAR ANNIVERSARY TO THE CCSVI FORUM!!!

Let the peer-reviewed publication of research into the vascular connection to MS continue.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Re: Chronic Cerebrospinal Venous Insufficiency (CCSVI)-

Postby JSTCD » Mon Jan 09, 2012 12:26 pm

So now that we're three years out, were are we?

When I first joined, CCSVI seemed too good to be true, and I was waiting to see if time would clobber it. But seems to have stood the test of time. On the other hand, doesn't seem to be proven yet either.

So where are we? Is this "cold fusion" or "simple antibiotics can cure stomach ulcers" Is there any scientific consensus yet?

There seems to be a lot of negative reports still, but a zillion really cool videos.
What happened to the original pioneers from three years ago, did they stay better, or did it turn out to be placebo? Because surely you can't have placebo after three years.
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Re: Chronic Cerebrospinal Venous Insufficiency (CCSVI)-

Postby Cece » Mon Jan 09, 2012 6:36 pm

Placebo is supposed to last six months at most, although there could be debate over that.
I'd say the scientific consensus is that, yes, CCSVI is more common in pwMS than in healthy controls. Beyond that, there is not a consensus on what it means that there is an association between MS and CCSVI. (Does one cause the other? Multifactorial? What effect does treating CCSVI have on MS?) But, compared to three years ago, there is a strong interest in CCSVI among the scientific community, in particular vascular researchers such as IRs. Just look at the conferences featuring discussion of CCSVI, and presentation of research on CCSVI. (ISNVD, SIR, ISET all coming up.)

There is research being done, although not the large-scale university research I'd like to see. Brave Dreams is Dr. Zamboni's large-scale RCT in Italy, but we need that duplicated here too.
Some of the pioneers are most definitely better, some are not.
It's not too good to be true. :)
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Re: Chronic Cerebrospinal Venous Insufficiency (CCSVI)-

Postby milesap » Mon Feb 27, 2012 2:58 pm

see Canadian special on MS wars
http://vimeo.com/37484943
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Re: Chronic Cerebrospinal Venous Insufficiency (CCSVI)-

Postby Lyon » Mon Feb 27, 2012 4:07 pm

milesap wrote:see Canadian special on MS wars
http://vimeo.com/37484943

Awesome, thank you! We in the US were previously blocked from viewing it at the network site.
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Re: Chronic Cerebrospinal Venous Insufficiency (CCSVI)-

Postby milesap » Fri Aug 24, 2012 2:13 pm

Bacterial infections weakens the veins the need for CCSVI may because of the CPn bacteria
http://www.cosmeticcentre.com.au/client ... 043332.pdf
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Re: Chronic Cerebrospinal Venous Insufficiency (CCSVI)-

Postby cheerleader » Wed Aug 29, 2012 9:51 am

This thread began as a discussion of CCSVI and Dr. Zamboni's studies. Since that time, Marie Rhodes has authored a book on CCSVI in MS. www.ccsvibook.com
She discusses cpn as a possible infection with vascular consequences of pages 43-45.
There are dozens of endothelial disrupters which can change the lining of the veins, and lead to more severe stenosis and slowed blood flow. These include metals such as mercury and cadmium, plastics, diesel fuel exhaust
food such as transfats and glucose
vitamin deficiencies such as D and B12
lack of exercise
cortisol and stress
viruses such as EBV
and a host of other environmental and infectious agents. There is not one cause of endothelial disfunction. For the full list and meaures that can help heal the endothelium, please see http://www.ccsvi.org/index.php/helping- ... ial-health
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Re: Chronic Cerebrospinal Venous Insufficiency (CCSVI)-

Postby cheerleader » Mon Dec 30, 2013 9:44 am

Five years for this thread---
Hundreds of papers have been published--Mostly negative findings, published in neurological journals, mostly positive findings/correlation published in vascular and phlebology journals. The debate continues.
http://ccsvi.org/index.php/component/se ... ask=search

The ISNVD has their fourth international meeting in San Francisco in February. Cerebral blood flow and cerebrospinal fluid are being studied in relationship to perfusion and brain health.
http://isnvdconference.org

on a personal level--Jeff continues to do really well, with no MS progression or relapses. His gray matter shows reversal of atrophy. He's back to skiing. Still mountain biking, hiking, working full days. His cerebral blood flow looks great. So, talk of placebo for him is negated. And I'm still trying to get more doctors to look at the connection of blood flow to diseases of neurodegeneration.
http://ccsvi.org/index.php/the-basics/c ... l-diseases

cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Re: Chronic Cerebrospinal Venous Insufficiency (CCSVI)-

Postby vesta » Mon Dec 30, 2013 12:35 pm

Hello cheer: Thanks for all your information. I think Jeff continued to take Copaxone after the venoplasty. Is he stll taking it, and for what reason? Thanks again, Vesta
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Re: Chronic Cerebrospinal Venous Insufficiency (CCSVI)-

Postby Cece » Mon Dec 30, 2013 2:11 pm

Five years!
We need more fanfare and fireworks up here.
I am grateful forever for everyone here and for the information on CCSVI.
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