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

Postby David1949 » Sun Oct 10, 2010 9:03 pm

I sent letters by snail mail to two of the doctors in Michigan, one in Warren and one in Royal Oak. The one in Warren sent back an email that said:

"David,

I am in receipt of your recent letter!
We are working with the hospital to arrange a local program. When prepared for the requ. of the registry, we will contact all those, who like yourself are interested in thier treatment locally.

Thank you for your inquiry!"



I haven't heard back from the doctor in Royal Oak yet.
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Postby nellie » Mon Oct 11, 2010 6:54 am

JCB--I tried a couple times to pm you but I guess I'm having no luck. Was wondering if you would share the Dr. you're using for follow up. I thought it might be 1 of the 3 I rcvd. to check with. You can pm if you'd like. Thanks.
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Postby JCB » Mon Oct 11, 2010 8:10 am

@nellie - check your PM's
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Postby nellie » Mon Oct 11, 2010 8:27 am

JCB --Thanks. I pm you back.
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Postby MS_HOPE » Mon Oct 11, 2010 8:34 am

Thanks Nellie, Cece, everyone. I'll get in touch with the Hubbard Fn for more info on the Cary, NC doc.
CCSVI:  Making Sense of MS
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Postby Cece » Mon Oct 11, 2010 9:59 am

If you would like to see how one of these sites are coming along, we can provide you with the name of the doctor nearest you that has already expressed an interest, and you can call them directly.

(the relevant quote from their website)
Contact The Hubbard Foundation
Our primary form of contact is e-mail:
hubbardfoundation@gmail.com

And while I was there I saw that the list of sites shrunk dramatically!! :(

Here's all that's on there currently:

Chicago, IL

Philadelphia, PA

Manhattan New York, NY

Kankakee, IL

Humble, TX

Vancouver, BC Canada

Applied Functional Mri Institute
San Diego, CA 92131-1664
(858) 444-3595
appliedfmri.org

Washington, DC

Minneapolis, MN

Billings, Mt

Hinsdale, IL

Omaha, NE

Novi, MI

Provo, UT
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Postby David1949 » Mon Oct 11, 2010 10:49 am

Wow the list of Hubbard sites has indeed shrunk dramatically. I'm sure all of us are concerned about that. Rather than each of us flooding Hubbard with inquiries can we delegate one person from Thisisms to ask them what happened?
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Postby nellie » Mon Oct 11, 2010 10:58 am

David--I think I know. Arlene from Hubbard told me so many haven't shown anymore interest. I'm sure they got to the point that they dropped them. It is reality I guess but disturbing.
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Postby Rokkit » Mon Oct 11, 2010 11:42 am

I'm wondering if they lost interest when they figured out they were going to have to get their hospital to adopt the IRB.
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Postby JCB » Mon Oct 11, 2010 11:47 am

I don't think we should try and read too much into this. What I am taking out of it is that there are a lot of IR's in the US that are interested.

Let's keep them interested!
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Postby bestadmom » Tue Oct 12, 2010 7:46 am

The IRB is for diagnostics only using the Haacke protocol. There is no treatment IRB. This doesn't sanction anyone providing treatment.
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Postby PCakes » Tue Oct 12, 2010 7:52 am

bestadmom wrote:The IRB is for diagnostics only using the Haacke protocol. There is no treatment IRB. This doesn't sanction anyone providing treatment.

?? really?? was treatment just optomistically assumed?
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Postby bestadmom » Tue Oct 12, 2010 8:00 am

Treatment might occur, it's just not under the IRB. It's all very confusing and means it's important to fully vet whomever you go to to do the procedure.
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Postby David1949 » Tue Oct 12, 2010 10:49 am

This is what it says at Hubbard's website:

"On Sept. 2 the Hubbard Foundation received final, non-conditional,
national IRB approval for testing and treatment of CCSVI (chronic
cerebrospinal venous insufficiency) at locations around the U.S."

(Emphasis mine)

Source: http://hubbardfoundation.org/CCSVI_mult ... ction.html
See last section on the page titled Additional Information.

So according to Hubbard the IRB approval does include treatment.
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Postby bestadmom » Tue Oct 12, 2010 11:04 am

David,

I'm checking into this. I'm the founder of the CCSVI Alliance and we've discussed the irb ad nauseum and met w/Haacke and Hubbard a couple of weeks ago. I just threw this back to my fellow board members because I don't want to be giving false info.

I'll let you know what I hear.

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