This Is MS Multiple Sclerosis Community: Knowledge & Support

The vascular doctor at Georgetown very clearly explains their CCSVI protocol, data gathering, and what's ahead. This is a wonderful model for how university specialists in neurology and vascular medicine can investigate CCSVI together.

link to WUSA 9 video

cheer

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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

Good talk; thanks Cheer

and my PC is not yet willing to play the video.-(( but I am working on it...

So they do exist...

I like this guy! Very smart and level-headed approach to studying CCSVI. Exciting!

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Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.

Good guy. We are lucky to have him. Interestingly, the vascular department usually only has the cath lab on Wednesdays. I know of two patients who are being treated on Fridays now, too!

Also, when a friend called to make her appointment for venogram, she was asked if she wanted to see Dr Neville or Dr. Laredo!

If you remember from way back when, he was the overexuberant doc who spilled to a Canadian reporter that GU was doing a study way back in January, I think.

He got in a lot of trouble after that! Guess things have smoothed over since then. He assisted or observed (I've gotten conflicting information) my procedure. He is very excited about CCSVI, so I think he will be a good addition to our team.

Once again, GO GEORGETOWN!

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Liberated at Georgetown U. 3/3/10. Subsequent procedures at U of Maryland with Dr. Ziv Haskal 7/30/10, 12/2/10, 5/11/11. http://myliberationadventure.blogspot.com

Lucky ... I think I've read it somewhere ... but hasn't the response of getting people into Georgetown for testing (not the procedure - just testing) been underwhelming?

Could anyone just call up and get in for testing?

It seemed like people weren't as excited about going in for the doppler testing as they expected. Maybe that's because they're not offering any type of procedure.

This was a great interview. I sent the link to a local IR.

Lucky, how are things going?

Only 50%. Huge discrepancy with the Zamboni and Simka numbers

Very consistent with others that have similarly low levels of experience with CCSVI. We won't see consistently high levels of detection until they start believing in the equation MS=CCSVI.

Thanks FlashHac, I hope to undergo testing and the procedure later this year and those kind of low stats scare the day light out of me...

How about this?:

Quote:

JOhnnybaby248 wrote:
It just keeps getting better and better more results out of Kuwait
http://www.ccsvikuwait.com/Details.aspx?d=4

I think that at GU, Buffalo, and many other places that are getting false negative results, it has more to do with the limitations of the equipment than "believing."

Ultrasound, even in the hands of the best technicians, can only see so much.

Unfortunately, only venogram can really detect and fix the stenosis. The study being done at GU, and eventually ones done elsewhere that test and treat, will show just how weak US is at diagnosing CCSVI.

But we need the studies to show US weakenss in order for every MSer to earn a venogram at diagnosis as easily as we get MRIs. It is more invasive and costly, of course. But when insurance companies see that treating CCSVI early on stops this disease from progressing, they will come on board in droves.

The cost of a venogram and angioplasty will look like pennies compared to the tens of thousands of dollars in DMDs that we cost them over our lifetimes!

And we all know that our health is really all about the $$$ to insurance and drug companies. Let them duke it out! That should be fun to watch!

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Liberated at Georgetown U. 3/3/10. Subsequent procedures at U of Maryland with Dr. Ziv Haskal 7/30/10, 12/2/10, 5/11/11. http://myliberationadventure.blogspot.com

Ultrasound (US) has advantages because it is quick, cheap and non-invasive. Unfortunately, there are places it can't see. Blockages in the azygos vein won't show up on US because that vein is behind bone.

So if you have MS and nothing is found on an US, your next step is to pursue a venagram, not to give up because of the assumption that no blockages exist.

Better equipment would certainly help, but belief is essential. If you are given a Where's Waldo picture and you're not certain that Waldo is even in there at all, you might give up after a few minutes. If you are sure there's a Waldo in there somewhere, you'll reach for a magnifying glass and find him. True believers are undeterred by a negative ultrasound and reach for the catheter because they are convinced that where there is MS, there is CCSVI.