CHARING CROSS - paper on line for free....

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

CHARING CROSS - paper on line for free....

Postby cheerleader » Thu Jul 23, 2009 2:08 pm

CHARING CROSS PAPER...on Liberation/Zamboni's endovascular balloon procedure results.
Here's one for the sticky, Marie :)

cheer

http://www.fondazionehilarescere.org/pdf/CX.PDF
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby cheerleader » Thu Jul 23, 2009 2:31 pm

Things learned from the paper:

They treated 18 patients in the MIDST of RELAPSES...and found that by giving the endovascular treatment of opening the veins during a relapse, with no steroids, the patients recovered function in 4 hours to 4 days. Zamboni's team feels this is the most conclusive evidence that venous blockage "PLAYS A CAUSATIVE ROLE IN MS PATHOGENESIS"

Zamboni chose not to stent jugulars, because he didn't have access to a stent that was suitable. (Dr. Dake has since helped with that...) and some of the balloon procedures did close down, however, still in RRMS patients treated with the endovasular balloon procedure, relapses were decreased by 4x in the next year, when compared to the prior year.

There were improvements in mobility and relief from fatigue.

Patients were treated in Feb. '07 and studied for a year before this paper was written and presented in London. No follow-up MRIS were done, which I find curious.
I'll read more and post...can't copy and paste.
cheer
Last edited by cheerleader on Thu Jul 23, 2009 3:31 pm, edited 2 times in total.
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby mrhodes40 » Thu Jul 23, 2009 2:57 pm

Wow. I'll put it on there immediately.

I want to share a few especially interesting items.

This paper tallies the preliminary results of what we have been calling the liberation 100 patients.

It is, as we knew ahead of time, endovascular treatment for stenosis in MS patients....Treatment of patients based on the CCSVI model. Once again all MS patients had 2 or mor abnormalities in the doppler assessment done by Zamboni's expert team demonstrating reflux into the cerebral system.

Venography was done to localize the stenosis. There were a variety of abnormalities seen from simple stenosis to twisted veins. There are pictures of the venograms on the paper, including pictures of the same veins after balloon angioplasty or stenting. These pictures demonstrate clearly improved flow.

Here is a breakdown of the stenoses seen;

In particular the azygous vein in the multiple sclerosis group was affected in 86% of cases. Most cases involved membranous obstructions at the junction with the vena cava, or, less frequently, twisting septums and atresia can be seen.

In 12 cases the azygous system presented stenosis at several points up to even atresia or agenesis of the lumbar plexuses (18%). As for jugular veins they were found to be steonsed unilaterally or bilaterally in 59 of 65 cases (91%).

(ed: typed in by me it was not copy/pasteable)

This seems to mimic the results TIMSers report after they have had MRV at Stanford with Dr Dake. The majority of us have reported jugular stenosis.

In this paper only results on the RRMS patients were reported
A total of 51 patients were treated with a relapsing remitting clinical course....results herein refer exclusively to results obtained on the relapsing remitting patients.


rates of relapse were compared before proceudre compared to after procedure
the probability of acute attack DECREASED more than 4 fold after endovascular treatment


They also demonstrated imporved MSFC-Z scores (like edss) see the paper...at 1 and 6 months.

And that fatigue is decreased by 50%, mentioning that this symptom is an orphan as far as improvement with any current known treatment.

They continued to monitor people on a routine basis with dopplers--if there was an abnormaility they did venography. Additionally any relapse of symptoms was cause for a repeat doppler and venography as indicated.

Incredibly------
All patients with restenosis corresponded to those who manifested new relapses in the year subsequent to the endovascular procedure


In other words if you had a relapse in this study YOU WERE ALSO A PATIENT WHOSE VEIN PLUGGED UP AGAIN.

It doesn't get any clearer than that.
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
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Postby mrhodes40 » Thu Jul 23, 2009 3:00 pm

Me n cheer are both reading and writing at the same time, cossing in cyberspace :lol: :lol:

--I know she is quivering with excitement as I am to be able to read this fantastic paper, it is like magic to read.... 8O :D :D :D :D :cry: :D :!:

please read it and post questions
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
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Postby cheerleader » Thu Jul 23, 2009 3:05 pm

mrhodes40 wrote:
In other words if you had a relapse in this study YOU WERE ALSO A PATIENT WHOSE VEIN PLUGGED UP AGAIN.

It doesn't get any clearer than that.


WOWOWOWOWOWO!!!!!

OK, I feel like I'm dueling with Quick-draw Mcgraw. You may have MS, Ms. Rhodes, but you also got flying fingers!!!!!

:lol:
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby mrhodes40 » Thu Jul 23, 2009 3:15 pm

Wowowowowo


ME TOO!!!!

I am in "pinch me " mode over this paper.

Read it a couple of times and really let it soak in, folks.

To quote wobbly 'stay strong; this is the real deal"
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
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Postby Ernst » Thu Jul 23, 2009 3:22 pm

Thank you very much from here Finland too. Fantastic paper! I was already going to sleep..but found Cheerleaders message about this. Just had to link this to Finnish forum too. But now to sleep, gotta get up early.
My wife's 3 yrs post video: http://www.youtube.com/watch?v=eLeqLps8XR8

Our family: http://www.youtube.com/watch?v=p_QCKxeQAlg
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Postby cheerleader » Thu Jul 23, 2009 3:27 pm

The bottom line:
If you are having a relapse, and your blocked vein is opened, the relapse stops and you regain function. This happened for 18 RRMS patients treated by Zamboni in the hospital.

If your vein clogs back up, you have a relapse.

I don't think the science can be any clearer as to cause and effect.
I'm soaking it in still...
(Marie-I bet the videos Dr. D. saw in London were of Zamboni's before and after treatment of folks in relapse. That was what convinced him it was real...and why he called me up when he got back.)
thank God-
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby LR1234 » Thu Jul 23, 2009 3:32 pm

.....
Last edited by LR1234 on Tue Mar 06, 2012 1:30 am, edited 1 time in total.
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Postby cheerleader » Thu Jul 23, 2009 3:34 pm

LR1234 wrote:So were the 25% relapses associated only with restenosis?

Yup..all restenosis patients had relapses. Hopefully, the stents will keep the veins open and prevent relapse.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby chrishasms » Thu Jul 23, 2009 3:57 pm

123
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Postby cheerleader » Thu Jul 23, 2009 4:02 pm

chrishasms wrote:Cheer, How does it feel to know you were right?


Chris...(Maybe it's cause I'm a girl, big sister, mom etc.) but it's never been about right/wrong. It's all about healing. I wanted my darling man to heal. I want my amazing friends to heal. That part feels really good. Now the prayer is that more docs get on board.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Rokkit » Thu Jul 23, 2009 4:12 pm

Just read the whole paper. I'm stunned.

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Postby Axiom » Thu Jul 23, 2009 4:46 pm

I'm going to re-read the paper now, but a couple of thoughts from the first skim through:

Zamboni found azygous issues in 86% of MS folks tested. If I'm reading posts here correctly, I believe Dr. Dake has only found azygous issues in 3 folks. Do you think the possible disparity is just due to the small number of patients seen thus far?

I too wonder why no MRI follow-up on the liberation patients? I can just imagine neuro's everywhere flipping out about that.

I really wish more info on the 11 and 13 cases of primary progressive and secondary progressive folks had been included. I understand those numbers are very small, but curiosity is killing me.
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Postby cheerleader » Thu Jul 23, 2009 5:06 pm

Axiom wrote:I'm going to re-read the paper now, but a couple of thoughts from the first skim through:

Zamboni found azygous issues in 86% of MS folks tested. If I'm reading posts here correctly, I believe Dr. Dake has only found azygous issues in 3 folks. Do you think the possible disparity is just due to the small number of patients seen thus far?

I really wish more info on the 11 and 13 cases of primary progressive and secondary progressive folks had been included. I understand those numbers are very small, but curiosity is killing me.


Hi Axiom...
Dr. Dake has seen mostly RRMS patients, and they typically have jugular stenosis only. The few primary/secondary progressive patients he's seen (I think it's 5 now- not all on are the site) have all had azygos blockage. What Dr. Dake has not found is azygos blockage in RRMS patients, which Zamboni did (in a few) This may be a genetic variant or just an anomaly. We should know more as the sample numbers grow.

I also wish there were more info on the progressive patients and MRI results. Perhaps that will be the focus of a future paper?
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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