Charité Berlin trial preliminary results?

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

Fly on the Wall

Postby Ruthless67 » Sun Jan 31, 2010 9:56 am

Here's an excerpt from one of the the radiologist's forums. It's interesting as heck to hear their dialogue.

"I did my first patient for CCVI who has MS.
The test was normal. I read all of the hand outs brought. It was very explicit. I am at home without the handout.
Will include it tomorrow. This test has to be very structured and duplicated for each side for comparison.
Don't know that I really knew what I was doing.
I also looked at the IVC at the suggestion of our neuroradiologist.

bil transverse IJV's measure inferior and superior,, all diameters measured.
" with valsalva, supine and then 85 degrees sitting upright head resting.on a pillow.

Doppler triplex normal respiration, valsalva with release, velocities measured inferior and superior jugular.

Valsalva and release velocity trace is hard to do within a few seconds.. but I was able to see the changes.
Obviously the velocity decreases with valsalva and increases with respiration.
I will read over the literature.
Is this going to be a test for every patient with MS?
... Oye the pressure.
Well we will see how the vascular radiologist reads it."


So it sounds like he is not confident yet, but going to read and learn the proper protocol. And a big THANKS to the MS Patient who brought the information packet for the radiologist! This is a revolution being brought about by the “little folks”, each of us taking one step at a time, each in our own way. The momentum is truly growing and I‘m proud to be on board.

Here's the link, you'll find the CCSVI references down the page aways. There are two differnt discussion sections, so don't miss the even lower entries. If nothing else, this is interesting billing info: "Venous insufficiency unspecified (459.81) is a billable indication for a venous exam."

http://list.uvm.edu/cgi-bin/wa?A1=ind1001&L=UVMFLOWNET

Lora
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Postby ozarkcanoer » Sun Jan 31, 2010 9:58 am

Very interesting, Ruthless ! Thank you.

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Postby Ruthless67 » Sun Jan 31, 2010 10:08 am

Thanks OC,

I found it interesting too. The radiologist I've been talking with is truly interested and I told her about the classes that are being held in Italy. I don't know if Marie or any other medical professional can log onto that forum, but it would be great if someone could and would post the information about the courses being offered on their forum!

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Postby ursula » Tue Feb 23, 2010 6:48 am

hi yannis,

rumors, rumors, rumors.(':oops:')
everyone has something to say about the charite trial but nobody took part.

i took part and the sonography wasn´t made by a beginner but by the leader of the sonographic institute of the charite.
and they are not at all sceptic about the ccsvi issue but interested.

they scanned my veins for at least 30 minutes with no abnormal result. i also asked dr. schreiber about the other people in the trial and he mentioned that they couldn´t find anything special so far.

let´s talk again in a couple of years then it will turn out if the stents and all that are really so effective.

ursula

p.s.: i also took part at the egcg trial and can say that i have been relapse free since i am on egcg.
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Postby mangio » Tue Feb 23, 2010 10:55 am

Ursula,
thanks for that info. I wrote to Charite University and received a very
nice reply from one of the trial doctors.

Can you tell me the dosage of ecgc you took for the trial?

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Postby frodo » Wed Feb 24, 2010 4:17 am

jay123 wrote:Just off the information you gave this can't be an accurate study. In every piece of preliminary and/or unofficial studies someone has had CCSVI (and the minimum number (which wasn't tested correctly) that we have seen is 50%), so to say they tested 40 people and none had CCSVI definitely means something is wrong, whether you believe totally in CCSVI or not.


In fact, according with Zivanidov test, even 20% of healthy subjects have CCSVI !!!!. Therefore is sure that they did something wrong.
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