CCSVI 101--a new video by Dr. Siskin from CCSVI Alliance

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

CCSVI 101--a new video by Dr. Siskin from CCSVI Alliance

Postby cheerleader » Fri Aug 12, 2011 10:52 am

New: from CCSVI Alliance, a video explaining CCSVI for those new to the concept. This video is suitable to all beginning to learn about CCSVI, and is available for use at local meetings. It is clear and concise.

http://ccsvi.org/index.php/the-basics/intro-to-ccsvi

cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Cece » Sun Aug 21, 2011 11:01 pm

*bump*

No comments? I haven't had a chance to watch it yet but I expect it's well done, if it's in line with the others at ccsvi.org.

When I was first learning about CCSVI, there were no ccsvi.org videos because there was no ccsvi.org (outside of the planning/work stages), there were no "I can jump" liberation videos, but there was a CTV video that had just come out. I remember watching it, awed.

There is so much information and options for those who are new, now. It is a good thing.
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Postby cheerleader » Mon Aug 22, 2011 9:11 am

thank for bumping, Cece.
It's very well done, and comes from a doctor who is currently running a clinical trial and has looked at over 600 pw/CCSVI.

I hope it helps people understand the science....it's in simple language with great graphics, and actually entertaining. Could be used at meetings, house parties and events and CCSVI Alliance will help out getting it to those who would like to use it.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby esta » Mon Aug 22, 2011 9:49 am

it's a great video
i passed it along to my local ms chapter to see if it could be used there
PPMS. Liberated Katowice, Poland
06/05/10 angioplasty RJV-re-stenodsed
26/08/10 stent RJV
28/12/10 follow-up ultrasound intimal hyperplasia
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Postby cheerleader » Tue Aug 23, 2011 9:16 am

esta wrote:it's a great video
i passed it along to my local ms chapter to see if it could be used there



Great idea, Esta!
There's so much misinformation and lay-person supposition out there---this is a really great source of information, from a doctor who understands CCSVI--
Hope it helps,
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Re: CCSVI 101--a new video by Dr. Siskin from CCSVI Alliance

Postby AnnLaFontaine » Wed Jul 17, 2013 5:27 pm

I had CCSVI done on my left side, now it is completely clogged and can not be reopened. The doctor suggested putting a leg vein in to bypass the area. I had my right side done also and it feels like it is still open. My MS symptoms are ok. Does anyone have experience with taking a leg vein and using it?

Thanks,
Ann
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Re: CCSVI 101--a new video by Dr. Siskin from CCSVI Alliance

Postby Cece » Wed Jul 17, 2013 5:41 pm

Welcome, Ann. I don't have experience personally with vein grafting to replace a blocked jugular but I would recommend you not to do this. I know of people who had this done and it was a failure.

There was a publication on it recently:
http://www.ncbi.nlm.nih.gov/pubmed/23809937

That was done at the Mayo clinic in AZ. The vein was taken from the leg and put in as a jugular. It worked at first and his symptoms improved and then it clotted and the vein was lost again.
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Re: CCSVI 101--a new video by Dr. Siskin from CCSVI Alliance

Postby munchkin » Wed Jul 17, 2013 6:13 pm

Hi Ann

I had this done and the bypass/graft failed as soon as I stopped the blood thinners. The vascular surgeon at home said that these grafted veins won't stay open.

My recommendation would be to not get this done, you can end up having more problems. Give this long thought, and if you can consult with a surgeon in your home city to get an other opinion. The vascular surgeon I talked to is one of the best in Winnipeg and he just said facts - no judgements about ms.

Take care.
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