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

Australia, let's get going

Postby mazza » Mon Nov 23, 2009 5:35 pm

I haven't been here long but can see things are moving quickly. I've started in my own small way to stir up interest in Sydney, but lots of brick walls so far. Will keep trying though. Anyone else making progress here?

Best of luck to everyone.
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Postby CRHInv » Mon Nov 23, 2009 5:56 pm

I know the documentary brought tears to many of our eyes, but this:

Cheer said:
Over 2000 on Facebook this am (1500 new members in one full day!)

This chokes me up. Think of all that hope!
dx 4/09 * Stanford appointment 11/09/09 * One stent left, low jugular 11/10/09!<br />One year from treatment, I have my life back.  Placebo schmebo.
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Postby ozarkcanoer » Mon Nov 23, 2009 5:57 pm

Welcome, mazza !!! I'm trying to stir things up here in St Louis, Missouri, USA. I'm glad you came here all the way from Sydney.

I am making some headway. I am participating in Dr Haacke's study, and I have an appointment with a fabulous neuroradiologist. My scans will be on Dec 7 in Detroit and my neuroradiologist appointment is December 9 at 8 AM in St Louis. I just today got the appointment with the neuroradiologist and about an hour ago I emailed his assistant the information on CCSVI.
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Postby bestadmom » Mon Nov 23, 2009 6:41 pm

Hi Mazza,

Keep pluggng away. There's a small group of us in the north east US who are. We've been chipping away at 100 interventional radiologists at university hospitals and have gotten some interested doctors who are investgating it further.

Our goal is to open their eyes to CCSVI and then hope they believe in it.

Our next endeavor is the media.

Michelle
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Postby mazza » Mon Nov 23, 2009 7:22 pm

Thanks for the encouragement. I plan to contact some of the major teaching hospitals in Sydney. Unfortunately my neurologist doesn't want to help me with this, which would make it easier. He's pushing medication (nearly 12 years now) but I would rather go down the CCSVI road. So far the response I'm getting is "it's too new, more research needs to be done."

I agree Michelle, the media is often more effective.

Fingers crossed for Ozarkcanoer.
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Postby Arcee » Mon Nov 23, 2009 8:38 pm

Mazza, there's a thread called "Aussie Action" that several folks from Australia have made comments on so maybe you could coordinate with them?
diagnosed RR in spring '04
1 stent placed in left jugular vein 7/15/09
on and off Copaxone
allergric to interferons and Tysabri
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Postby daniel » Wed Nov 25, 2009 9:32 am

Just felt this post could use a bump to the top of the list =)
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