Who are the BIG names in CCSVI ?

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

Postby ozarkcanoer » Tue Nov 24, 2009 1:33 pm

FairyGodMother... I think cheerleader initially contacted Dr Cooke who put her in contact with Dr Dake. But don't take my word for it. cheerleader would be the best one to answer this question.
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Great, can we get an updated list emailed to us?

Postby girlgeek33 » Fri Nov 27, 2009 5:08 pm

I have an appt in 2 weeks to talk with my neuro about CCSVI. I would love to go armed with as much information as possible. I feel your list will be excellent addition to give to him so that he could reach out to others if he needs to...

Thanks!!!!
Denise
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Postby ozarkcanoer » Fri Nov 27, 2009 5:11 pm

:D I hope this helps you, girlgeek !! That's why I started this post. Sometimes doctors need big names to grab their attention.
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only 3?

Postby girlgeek33 » Fri Nov 27, 2009 5:43 pm

Considering that the Liberation treatment is either angioplasty or stints, these are fairly common procedures. Shouldn't any vascular surgeon be able to perform this procedure? I have to believe there are more than 3 in the world that would be able to perform the procedure, the big question is how many are willing?
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Postby ozarkcanoer » Fri Nov 27, 2009 5:55 pm

girlgeek,

Before Dr Zamboni, angioplasty had never been used before to treat stenosis of the jugular or azygous veins. It is a whole area of the body that interventional radiologists have never looked at. There are sometimes particular problems with the position of the occlusion. Read through this thread and you will see the unfortunate experience of a patient who was stented just this week :

http://www.thisisms.com/ftopict-8928.html

So right now most interventional radiologists have no experience to guide them. Much research and discussion should happen so guidelines for this procedure can be adopted.
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Does anyone know who is funding these trial?

Postby Renoandi » Sun Nov 29, 2009 12:40 pm

Wondering who is backing this here in the US money wise. I hope it isn't a drug company or affiliate.

Andrea
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nobody in canada???

Postby angie » Mon Nov 30, 2009 11:34 am

so is there nobody in canada?
I'm in toronto, ontario and looking for someone open to the idea.
thx
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Postby ozarkcanoer » Mon Nov 30, 2009 11:42 am

angie... There are a lot of people on TIMS from Canada. You just have to take the time to read the posts. I know there are a lot of posts here so here a a couple you might be interested in :

http://www.thisisms.com/ftopict-8955.html

http://www.thisisms.com/ftopict-8901.html

As far as the BIG NAMES are concerned, there is no one that I know about yet. When some big name from Canada speaks out in favor of CCSVI then their name may be added. Just keep me informed on what you hear.
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Postby kfreeman » Mon Dec 07, 2009 7:25 pm

who are the ones that work on children?
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Postby ozarkcanoer » Mon Dec 07, 2009 7:49 pm

Hi kfreeman,

Dr Bianca Weinstock-Guttman who is involved with the Buffalo CCSVI clinical trial :

Pediatric Multiple Sclerosis Center of Excellence
Women & Children's Hospital of Buffalo
219 Bryant Street
Buffalo NY, 14222

Here is a link about her :

http://findadoc.med.buffalo.edu/profile/facultyprofile.asp?ht=fd&t=r&fid=0F70L4CY1

I hope you find some help and encouragement from her.
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Direct-MS Ashton Embry

Postby Moom9335 » Wed Dec 09, 2009 9:50 am

I would add Direct-MS, Ashton Embry who is at the forefront of supporting and informing regarding CCSVI. He is the person who sent me a notice of CCSVI when I had never heard of it before. Presently, his charity has donated $75,000 to the U of Buffalo study. U of B needs funds to continue the research.

What is so important about Embry & his charity is that they remain unintimidated by big pharm or medical disciplines that refuse to give credit to their studies. He has funded many reputable studies including a major one on Vitamin D & its function in MS. Until his study, doctors were still refusing to see the relationship of Vitamin D to MS prevention.

My adult son has MS, and I want to see him and all of you cured! It is my driving passion in life.

Please donate to othe U of Buffalo study. The faster we get CCSVI proven, the sooner it will become mainstream. :idea:
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CCSVI doctor in canada

Postby queenofsoups » Fri Dec 11, 2009 8:14 am

anyone has a list for doctors in canada who are CCSVI friendly. my husband does not want to go to his own GP because we know he will be rejected.
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Postby ozarkcanoer » Fri Dec 11, 2009 11:18 am

Moom9335... Be careful, Dr Zamboni does not claim that "The Liberation Procedure is a cure for MS. It is a treatment for CCSVI. The HOPE is that CCSVI treatment will significantly slow or stop progression in people with MS. Please keep this in mind. If we advocates for CCSVI misrepresent it to our doctors then we may be considered over zealous. But be hopeful !!

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Postby smichel » Fri Dec 11, 2009 2:52 pm

hay everyone
my daughter 23 years old, surgical resident, was recently (six months) diagnosed with MS, she is on tysabi now
i wonder if someone can give me a list of who in North america do the testing and the surgery if needed
i live in Canada but i am willing to go anywhere in North america to get her tested and treated
u can respond to my private email. s.michel@shaw.ca
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Postby ozarkcanoer » Fri Dec 11, 2009 2:56 pm

smichel,

here is a link to all the currently known testers and treatments :

http://csvi-ms.net/en/content/ccsvi-treatments

Also there is a lot of other information on the csvi-ms.net website that might interest you.

Good luck
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