Simple questions

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

Simple questions

Postby fmanerchia » Tue Jul 13, 2010 8:40 am

Maybe I just named the subject that because I'm a simple guy. I'm a long time lurker and I've been captivated by the CCSVI news since it broke. I was just wondering about a few points. How can you tell how much iron is in your brain? What symptoms would lead to a doctor ordering a Venography (regardless of an MS Dx?) What's the deal with Communitycare and the Liberation Gateway? I know that CC is in New York; is LG for traveling abroad? Are there any other reputable organizations doing testing or liberations? Do any of them take private insurance or Medicare? Has anyone shown definite proof of success after being liberated, decreased iron levels or disappearing plaques on MRIs? I'm sorry if these questions have already been answered elsewhere. I'm just grateful for all of the information that I've been able to find here.
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Postby Cece » Tue Jul 13, 2010 9:19 am

So many qs!
Yes, people have had what seems like proof after liberation, but outside of a trial, it doesn't really count as proof. MS is a disease that has some ups and downs, at least with the RRs, and couple that with the power of belief...well, I think the anecdotes are overwhelming and it's for real, but we can't call it proof, that is for sure. Have you read Zamboni's research paper on his endovascular treatment trial? That might constitute proof....

CC is in NY, they are just another of the doctors doing this but most are under the radar and they are not. Hence the 700+ person waiting list. Not sure about Liberation Gateway?

You can't really tell how much iron is in your brain unless you go to Buffalo and have Dr. Haacke scan you with a Tesla-7 MRI, which is a new powerful MRI that can show up this iron. But you can assume that if you have MS you have iron in your brain; this is what Dr. Haacke's research tells us.

Yes, most US docs are taking insurance or Medicare. :)
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Postby fmanerchia » Tue Jul 13, 2010 9:56 am

Cece,
Thanks for the answers. What symptoms would necessitate my primary ordering the tests? I was just reading a post about donating blood having a positive (but temporary) effect. Is the issue too much iron in the brain or in the blood ?
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Postby Cece » Tue Jul 13, 2010 10:26 am

We have all had some difficulty getting primary docs or neurologists to order the testing for this! All I can say is what I did: I brought Zamboni's research into my primary doc, she thought it made sense and tried to order an MRV (which she had never ordered before), she talked to an IR that told her it was all junk science, and that was it from that angle.

What I ended up doing was finding an IR who treats CCSVI and then finding out that my insurance doesn't even require a referral for this.

The donating-blood idea is one of the ideas being tossed around, some people have found that it helps, I have not tried it. But the issue is not too much iron in the blood; it is too much iron in the brain. Iron is (theoretically) getting into the brain by diapedesis or leakage through a weakened blood brain barrier. Reflux is what weakens the blood vessel walls that make up the BBB. Reflux is documented in similar venous-drainage-blockage conditions lower in the body and it results in similar lesions on the liver (budd chiari) or skin (CVI). :)
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Postby Blaze » Tue Jul 13, 2010 10:58 am

Liberation Gateway is an organization (Canadian-based I think) that offers to connect people with medical professionals for CCSVI treatment and testing. They also offer to coach people in getting referrals.

They say they have medical connections. The physician shown on their website (who is also their VP of is in India. I don't know how reputable Liberation Gateway is or if they have connections with physicians outside of India. The website says they will be holding a webinar this Saturday (July 17).

You asked about other organizations. I understand Arizona Heart institute in Phoenix will be offering testing and treatment later this summer or early fall. I don't know a lot about it, but here's what I've been told:

Even if patients have been tested elsewhere with MRV or ultrasound, AHI will not use those tests. Instead, they require their own specific tests. Costs have not yet been determined, but they are working with private insurance companies in U.S. to try to have it covered. A vascular surgeon will do the procedure, but they have not given me the name of that physician. They will not use stents.

They already have a waiting list. As of a few weeks ago, there were more than 200 ahead of me. I think they have added more than 100 since then.

The last time I checked a few days ago, there was no information on AHI's website about CCSVI. Contact for the waiting list is Teresa Capriotti, who is a nurse. Her e-mail is TCapriott@azheart.com She has been really good about getting back to me relatively quickly (ie. a day to a week) when I have contacted her.

I don't know anything about AHI, but I was speaking with a cardiac nurse who recently returned to Canada from working in Arizona. She said AHI has an excellent reputation.

I hope that helps a bit. Good Luck.
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Postby fmanerchia » Tue Jul 13, 2010 11:13 am

Cece and Blaze
Many thanks for answering my questions. So I guess the only way to find a participating IR is keep calling until you hit paydirt?
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Postby Blaze » Tue Jul 13, 2010 11:29 am

Oops! I made an error in Teresa Capriotti's e-mail address. It is TCapriotti@azhealth.com (I left off the i at the end of her name in my earlier post. Sorry about that!javascript:emoticon(':oops:')
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Liberation Gateway

Postby LouDietrich » Tue Jul 13, 2010 11:36 am

Blaze wrote:Liberation Gateway is an organization (Canadian-based I think) that offers to connect people with medical professionals for CCSVI treatment and testing. They also offer to coach people in getting referrals.

They say they have medical connections. The physician shown on their website (who is also their VP of is in India. I don't know how reputable Liberation Gateway is or if they have connections with physicians outside of India. The website says they will be holding a webinar this Saturday (July 17).


Hi, yes we are holding a free webinar this Saturday from noon to 2 p.m. (Eastern Time). All are welcome to attend the webinar that will explain the journey, provide you an opportunity to "meet" Dr. Kumar and learn more about the CCSVI procedure at the hospital in India.

You can find more information and pre-register here -> http://www.liberationgateway.com/webinar.php
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