posted in patientslikeme.com

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

posted in patientslikeme.com

Postby costumenastional » Tue Jun 08, 2010 11:46 pm

His son often posts in Joan's page also i think.

Introduction (updated May 16):

I'm a neurologist, I run an fMRI research facility in San Diego, CA (Applied fMRI Institute). In December my son was diagnosed with MS. I discovered that most of what my colleagues told Devin was just not accurate: the search for a virus or an auto-immune attack on myelin has not been fruitful. Zamboni's reinvigoration of the venous insufficiency theory made sense to me and I pursued it. I went to the February conference in Hamilton Ontario and met Zamboni, Zivadinov, Dake, Simka and Haacke. I joined Haacke's consortium and in April began offerring the comprehensive Haacke MRI Protocol.. My son was the first person I tested and he tested positive. I found an interventional radiologist (IR) who found serious obstructions of both internal jugulars and the azygous and ballooned them May 6th. I've submitted an IRB to the hospital and expect approval by mid-June. Although in my opinion no IRB should be necessary for a standard and safe procedure to correct venous obstruction, obtaining an IRB seems the prudent strategy to prevent interference given the sad history in Canada, Stanford, Brooklyn and elsewhere. By mid-June we will be able to refer patients who have positive Haacke testing to the IR. The Haacke Protocol at AFI costs $2500 and should but may not be covered by insurance. I haven't received the bill or insurance EOB for the angioplasty but I will post that as soon as I find out; I see no good reason the angioplasty should not be covered by insurance either. Our last challenge is to be able to arrange the testing and the treatment at the same time in San Diego, but we're working on it. We send our data to Haacke at Wayne State Medical School in Detroit and it presently takes about two weeks to get back the result.

Also please visit www.hubbardfoundation.org , www.appliedfmri.org , and on Facebook CCSVI Test, San Diego where my son who was ballooned last week, posts his frequent updates.

You can also of course continue to send me private messages.

David Hubbard MD
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Postby hwebb » Wed Jun 09, 2010 1:32 am

Dr Hubbard's website is excellent - check it out:

http://www.hubbardfoundation.org/multip ... brain.html

Great to see a neurologist with an open mind, and thirst for knowledge.
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Postby Habenoughyet » Wed Jun 09, 2010 4:26 am

A son also having the disease helps...

HEY :wink:
"Never argue with stupid people... They bring you down to they're level and beat you with experience"
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Postby jackiejay » Wed Jun 09, 2010 4:29 am

or a wife....
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Postby Rokkit » Wed Jun 09, 2010 8:59 am

Habenoughyet wrote:A son also having the disease helps...

Bingo.

jackiejay wrote:or a wife....

Double bingo.

Oh and lots of luck on the IRB approval.
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Postby ssmme » Wed Jun 09, 2010 9:26 am

I sent an e-mail to the Hubbard Foundation and am awaiting a response back. Has anyone else sent an e-mail or called and got a response?
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Response

Postby SandyK » Wed Jun 09, 2010 2:28 pm

Hey Marcia...I received a response from Hubbard. I was told the surgery was 22K. I passed. I don't have that kind of cash.
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Postby LR1234 » Wed Jun 09, 2010 2:42 pm

22K I hope that includes being retreated if you get restenosed!!!
Wow that is a bit strong.
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Postby garyak » Wed Jun 09, 2010 3:31 pm

I emailed and await their response.
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Postby 3girls » Wed Jun 09, 2010 5:18 pm

I have been there for CCSVI testing - still waiting for results. The cost for the testing is $2500. They don't do the procedure there but are working with a doctor in San Diego to so the procedure and I was told it would cost $11,500.
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