Befuddled over CCSVI...

kitkat2 · Post by **kitkat2** » Mon Oct 25, 2010 9:34 am

I am on waiting list for ccsvi testing/treatment.[Albany] Was told it would be "well into 2011". argh... Have spent many hours researching. Today I found a link to a page that describes in great detail the parameters of the studies in the U.S. They only accept patients with certain types of ms and a narrow range of edss scores,a third of all patients will get the "Sham" treatment and will not be told, etc.

What if I simply want to be tested and treated?

Would someone here help me out? I mean, Pacific Interventionalists appears to be the only place to get guaranteed treatment--no shams. Or does Albany offer regular treatment separately from the study? I read about someone who got worse after having her 'treatment' at a ccsvi study. I understand the importance of double blind studies, but this person is very discouraged.

Thanks for reading.

Cece · Post by **Cece** » Mon Oct 25, 2010 9:49 am

Albany has the trial going on separately from the treating-only list. As someone traveling in, you would not be able to be in the study, you would be guaranteed treatment. This would also be true at Arata's clinic, Mehta's clinic or anywhere. But you are in MN? We are very close to having a local doctor available here. He is the 'yellow dot' on the Hubbard registry list.

It's hard to evaluate what we've heard of post-procedure outcomes. Some definite wow stories. Some definite warnings. I am planning to go for this, but with a carefully chosen doctor and treatment plan and follow-up care in place before I go. Dr. Zamboni also recommends an anticoagulant regimen post-procedure, but some docs are using an antiplatelet regimen (Plavix) or none at all if it's angio.

Hope this is of help. I am in MN too.

kitkat2 · Post by **kitkat2** » Tue Oct 26, 2010 5:37 am

Hi Cece!

Thanks for your helpful response!

Nice to have a fellow Minnesotan here. I am grateful for the registry map. I certainly would appreciate being able to have this tested/treated locally...Especially since I really don't travel well anymore. In lightweight wheelchair and transferring myself is challenging. Happy to see docs applying for IRB.

Let's hope and pray this is completed soon in MN.

Hockeydad · Post by **Hockeydad** » Tue Oct 26, 2010 6:41 am

I was invited as well to the study. Same thing, 600 people invited, 400 treated, 200 get the "sham". But, they still charge 10K or so to get in. If you get the treatment; fine, if you don't and still want it, they will charge you. How does that make any sense?

concerned · Post by **concerned** » Tue Oct 26, 2010 7:47 am

Hockeydad wrote:I was invited as well to the study. Same thing, 600 people invited, 400 treated, 200 get the "sham". But, they still charge 10K or so to get in. If you get the treatment; fine, if you don't and still want it, they will charge you. How does that make any sense?

They're taking $6,000,000 dollars from patients for a study of something that might not work at all? And only giving it to two thirds to boot?

Don't people get paid to be in drug studies?

Hockeydad · Post by **Hockeydad** » Tue Oct 26, 2010 7:53 am

That's my point. I can pay 9K or so with Dr Siskin, get treated and move on. Oh, and you have to wait a year as they do their study over that period.

Cece · Post by **Cece** » Tue Oct 26, 2010 7:56 am

What I read was that everyone pays for the catheter venogram, either OOP or through insurance. The ballooning itself is paid for by the study.

Funding is an issue for the researchers. It was one of the points mentioned in the list from the IRB at the time of Dr. Sclafani's rejection.

Denise Manley has been raising money for Dr. Siskin's trial, she is halfway to her goal of $10,000:

http://www.firstgiving.com/ccsvi

Hockeydad, yes, as patients I cannot see that being in such a trial is in our own best interests at this time.