Buffalo Newsletter

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

Postby sbr487 » Fri Feb 05, 2010 6:42 am

Sometime in future, when MS history book are re-written, Cheerleader's name will be etched in GOLD ...
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Postby yonderboy » Fri Feb 05, 2010 6:56 am

Just in case this isn't posted somewhere else, and I'm being very brief cause' I've got to get to work!

The BNAC.net website already has an online questionairre built for submitted information for the CCSVI imaging tests noted in the newsletter. The pricing on the site is $4,500 for the full imaging (Doppler and MRI) and all related reports, $6,000 for the same plus limo and hotel service.

Congats to ALL of you CCSVI pioneers! - My (brief) read of this is that either everything points to an overwhelmingly positive result on the first 500, or Zivadinov has simply gone insane...
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Postby HappyPoet » Fri Feb 05, 2010 6:57 am

Actually, upon re-reading, while a part of me understands why this was said, it saddens me nonetheless.

Like you, we look forward to the possibility of a proven and safe endovascular treatment for MS. While we cannot recommend such treatment today, with your understanding and help, we hope we will be able to do so in the future.


How far in the future???

~HP

.
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Postby costumenastional » Fri Feb 05, 2010 7:02 am

Happy poet,

One should really not expect from a well respected scientist to suggest some kind of invasive treatment in the open without the entire medical community approves it first.
Nonetheless, even a blind person can see that what he said is just a breath away.

And we should be grateful to say the least.
Last edited by costumenastional on Fri Feb 05, 2010 7:04 am, edited 1 time in total.
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Postby RuSmolikova » Fri Feb 05, 2010 7:04 am

HappyPoet wrote:While we cannot recommend such treatment today
with your understanding and help, we hope we will be able to do so in the future.

HappyPoet wrote:How far in the future???


There might be some definition of "the future". Any suggestions? :wink:
Last edited by RuSmolikova on Fri Feb 05, 2010 7:06 am, edited 2 times in total.
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Postby mshusband » Fri Feb 05, 2010 7:05 am

I don't mean to hi-jack this thread by any means because I think the topic is so important and fascinating ...

but what exactly did cheerleader do for CCSVI? I'm new and don't necessarily know where to look back to find out ...

just a brief overview for others who are new as well.

Believe me I appreciate her being and advocate, leader and her insights ... just wanted some details!
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Postby kc » Fri Feb 05, 2010 7:17 am

Yes Cheerleader Joan,

Thank you for using your energy to promote this as some of us don't have the energy to do so. Kudos to you

kc
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Postby costumenastional » Fri Feb 05, 2010 7:21 am

Mate, Joan is the most active CCSVI advocate without even being an ms patient. She brought awareness on the subject in the internet and tv etc, etc, by offering VERY valuable to everyone who has ears.
That was the least one can say.
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Postby jozee » Fri Feb 05, 2010 7:43 am

WOW! Cheerleader, thankyou for everything you have done. Words don't seem to be enough to express my gratitude.

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Postby youbetcha » Fri Feb 05, 2010 8:07 am

This is FANTASTIC news!

Thanks to everyone who made this possible....and yes, God Bless Dr. Zamboni!
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WE cannot

Postby dunkempt » Fri Feb 05, 2010 8:34 am

Like you, we look forward to the possibility of a proven and safe endovascular treatment for MS. While we cannot recommend such treatment today, with your understanding and help, we hope we will be able to do so in the future.


Yes, they *they* cannot *recommend* (as an institution). But they are offering tests that would have little purpose unless they were taken to someone who might. I believe *they* are speaking very carefully in these 4 pages, and *they* are being appropriately cautious as an institution.

(I might add that my anti-ccsvi neuro felt that the evidence of long-term benefits of IMD was so equivocal that he specifically did not *recommend* I be on one either. And yet here I am on Avonex.)

We already know there is a small but growing number of doctors who would be ready to do this; so does BNAC. We also all already know there are some risks involved; so does BNAC. So they are speaking accordingly.

Don't worry about that part; this newsletter just good news.

-d
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Postby mshusband » Fri Feb 05, 2010 8:46 am

I think even better news is the fact that the BNAC website is now OFFERING tests for CCSVI (though I think the limo part is a bit crazy) on a pay-for-testing basis (for now until it becomes insurance covered) AND is starting a study on the treatment trial they think is best.

I'm sure all doctors are going to have different opinions (Dake, Mehta, Zambon, Simka) on what they think is the best treatment method - for now ... but what you can't question is that they all think treatment is worthwhile!

We're going somewhere here, and I believe we're going to get there pretty quickly (to tell you this man's opinion).

As their newsletter implies, this is going to change the basic thinking about MS ... it's going to be BIG. What an exciting time to be honest.

And not just that, the Biogen focus on repairing damage just adds to it ... I'm typically anti-drug company and their influence in the medical industry ... but I think they're going in the right direction on this one ... I've got to give them credit on that.

And if not that ... stem cells.

Just wait people ... it's going to be a fast change in the coming weeks, months, and years about where this goes!
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Postby ozarkcanoer » Fri Feb 05, 2010 9:03 am

mshusband,

cheerleader is just the wife of a person with MS. But this site and the CCSVI facebook page, and her contacts with Dr Dake and her contacts with Dr Zamboni, and "The Liberation Procedure" documentary... all these are ultimately due to cheer's efforts. It is cheer who read Dr Zamboni's 2008 paper and started the search here in the USA. We owe a lot to her. She and her husband should be in the audience when Dr Zamboni receives the Nobel Prize for Medicine !!!

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Postby Rieja » Fri Feb 05, 2010 9:15 am

Just received the BNAC newsletter in my personal email. I signed up for their study back in Jan... maybe I will get selected for the study :)

Here's hoping!
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Postby AlmostClever » Fri Feb 05, 2010 9:20 am

Please correct me if I'm wrong butisn't Jeff (Joan's Hubby) the first to receive treatment by Dake?

P.S. We ALL deserve limos!!!
If you can't explain it simply, you don't understand it well enough. - Al Einstein
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