Dr. Richard Neville at Georgetown-

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

Re: Newbs

Postby sbr487 » Wed Apr 28, 2010 9:01 am

FlashHack wrote:
lucky125 wrote: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."

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.


How true. 3 teams, 3 varying results, one of them is the German neuro team which concluded that MS and CCSVI are randomly related. This is a case of finding what you wanted to find.
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Postby Lyon » Wed Apr 28, 2010 1:33 pm

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Re: Newbs

Postby lucky125 » Wed Apr 28, 2010 2:21 pm

FlashHack wrote:
lucky125 wrote: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."

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.


I totally get what you are saying about "believing." I know that the tech at GU really wants to find problems. She thinks this is fascinating. The equipment is holding her back.

Luckily my neuro is well aware of this problem and is referring some patients for venogram whose US results are negative, or below thresholds, but show clear symptoms in clinical exams. He gets it.

I'll say it again, GU rocks!
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
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Postby mshusband » Wed Apr 28, 2010 2:47 pm

Lucky ... sorry, I asked the question before and didn't get an answer and am very interested.

Does GU offer open testing? Could we come down just for testing (I don't expect the procedure at all) ...

cost?

Thanks.
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Postby Rosegirl » Wed Apr 28, 2010 4:41 pm

Lucky125, I just sent you a pm. I hope you got this one.

I had an ultrasound scan at Georgetown on April 7 and just found out that both jugulars are fine.

I wonder what happens now.

MShusband - Georgetown will do the scan for anyone referred. Check their website. When I was there, the tech was surprised that more people hadn't booked appts for a scan. She said they were only booked for the next couple of weeks.

Georgetown billed my insurance company about $380. I have crummy insurance, but I only had to pay $39! Sure beats the cost of a Tysabri infusion. . .
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Postby lucky125 » Wed Apr 28, 2010 4:57 pm

mshusband wrote:Lucky ... sorry, I asked the question before and didn't get an answer and am very interested.

Does GU offer open testing? Could we come down just for testing (I don't expect the procedure at all) ...

cost?

Thanks.


I see that Rosegirl answered your question. Problem is that they won't do anything more than do the scan. It is up to your referring doc to interpret the results. Then what? If there is reflux I think that it might be easier to get the attention of a vascular or IR doc, especially if testing was done at GU which is publicly investigating CCSVI. That might carry some weight.

It's a crapshoot, unfortunately.

If insurance doesn't cover it, I think it is $400. Not cheap, but if it gets you closer to Liberation, it might be worth it.

I wish I had better answers for you!
Nicole
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
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Re: Newbs

Postby muse » Wed Apr 28, 2010 5:21 pm

sbr487 wrote:..How true. 3 teams, 3 varying results, one of them is the German neuro team which concluded that MS and CCSVI are randomly related. This is a case of finding what you wanted to find.


The “German neuro team” who is doing real junk sience is actually the complete advisory board of the German MS-Society!!! :evil:
Best Arne http://www.csvi-ms.net/en
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Postby coach » Thu Apr 29, 2010 11:05 am

RG,
You're right about the limitations of the Doppler as an investigative tool. I am SPMS and had a normal Doppler. There were a few places on my MRV that Dr. Dake thought needed a better look through venogram. I guess my azygous was stenosed 90-100% aince the dye they inject into the vein on the venogram in the doctor's words to my husband "blew back in his face" or really the camera.
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