HUBBARD REGISTRY-YELLOW DOTS

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

Postby bestadmom » Tue Oct 12, 2010 11:08 am

David,

It does include treatment, but the IR has to sign on with the registry and promise to do all of the follow-up with the Haacke protocol testing. There's no set treatment protocol.

MB
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Postby David1949 » Tue Oct 12, 2010 11:27 am

Michelle, Thank you for that info and for all your work at CCSVI Alliance.

Dave
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Postby Cece » Tue Oct 12, 2010 12:18 pm

It makes sense that there's no set treatment protocol, since the docs are all doing it however they think best (stents, no stents, different balloon sizes, etc). So the data generated won't be as clean as it could be if the different sites were somehow standardized. But it will still be data! And it will still be MSers getting treated. I'm happy enough.
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Postby Billmeik » Tue Oct 12, 2010 1:01 pm

anybody know who the vancouver canada site is?
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Postby Cece » Tue Oct 12, 2010 1:20 pm

I am 100% sure it is False Creek. But I have MS, so I am never 100% sure of anything.

(edited to clarify)
Last edited by Cece on Tue Oct 12, 2010 1:38 pm, edited 1 time in total.
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Postby Billmeik » Tue Oct 12, 2010 1:34 pm

anybody know who the vancouver canada site is?
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Postby David1949 » Tue Oct 12, 2010 2:45 pm

I guess I'm happy that there isn't a standard protocol for treatment at this time. What protocol would it be? I don't think anyone knows what works best yet. As long as they are tracking results maybe one doctor's protocol will be more successful than the others and then that will become the standard.
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Postby bestadmom » Tue Oct 12, 2010 3:09 pm

The doctors need to compare notes too.

I recently heard that Sinan in Kuwait is getting 98% patency rate at 3 months w/18mm balloons, which are bigger than are being used here. He also routinely "cleans out" the azygos as a precaution to make sure there aren't any webs. I don't think anyone else is getting results like that, with or without stents.

There is so much learning to do and it's very exciting to be part of the science.
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Postby PanosB » Thu Oct 14, 2010 10:38 am

David

From reading your posts i can guess that you live in Michigan.

The Hubbard foundation map has Novi turned to yellow today...
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Postby David1949 » Thu Oct 14, 2010 11:41 am

PanosB Thanks for the info. I'll look into that.

BTW Since the Warren Michigan site dropped off the map I emailed the doctor there and asked him what happened. This was his reply:

"I did not remove myself from the registry...thanx for the lead...I will follow up and hopefully have it corrected."
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Novi & Warren

Postby newlywed4ever » Thu Oct 14, 2010 5:54 pm

This is good news about 2 places in Michigan. There may be a 3rd in Grand Rapids, also!
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Postby bigfoot14 » Fri Oct 15, 2010 7:41 am

for all of you in the high plains...

one of the dots turned yellow in Minneapolis.....
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Postby thornyrose76 » Fri Oct 15, 2010 12:47 pm

that's great news, even though I'm stuck in Canada, but travel wise I'd rather be treated closer to home(Winnipeg)- Two hour travel is better than a plane change and several hours travel. :)
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Postby garyak » Fri Oct 15, 2010 3:27 pm

Billmeik wrote:anybody know who the vancouver canada site is?


It is False Creek, they have an IR lined up to do the procedures. This is what Devin Hubbard and his mon Arlene told me 3 weeks ago.
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Postby thornyrose76 » Fri Oct 15, 2010 5:13 pm

Yeah but the Canadian/provincial gov't isn't allowing the procedure to be done here or is it going to be bc false creek is a pay-out-of-pocket service?
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