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This stinks, I'd say. This plus the fact that Dr. Dake was not allowed to talk in the documentary. I hope the announced 'unblinding' of the first phase of the Buffalo study will not be delayed, too. It's possibly got to do with the downside of all the pressure the internet can generate, especially when teaming up with the old media.

Boreas wrote:... the fact that Dr. Dake was not allowed to talk in the documentary.

Huh? I didn't read of this. Whats this about?

Is this what you're looking for ?

J Neurol Neurosurg Psychiatry 2009;80:392-399 doi:10.1136/jnnp.2008.157164

* Research paper

Chronic cerebrospinal venous insufficiency in patients with multiple sclerosis
This article has been Unlocked

1. P Zamboni1,
2. R Galeotti1,
3. E Menegatti1,
4. A M Malagoni1,
5. G Tacconi1,
6. S Dall’Ara1,
7. I Bartolomei2,
8. F Salvi2

+ Author Affiliations

1.
1
Vascular Diseases Center, University of Ferrara, Ferrara, Italy
2.
2
Department of Neurology, Bellaria Hospital, Bologna, Italy

1. Professor P Zamboni, Vascular Diseases Center, University of Ferrara, 44100 Ferrara, Italy; zmp@unife.it

* Received 2 July 2008
* Revised 7 November 2008
* Accepted 10 November 2008
* Published Online First 5 December 2008

Abstract

Background: The extracranial venous outflow routes in clinically defined multiple sclerosis (CDMS) have not previously been investigated.

Methods: Sixty-five patients affected by CDMS, and 235 controls composed, respectively, of healthy subjects, healthy subjects older than CDMS patients, patients affected by other neurological diseases and older controls not affected by neurological diseases but scheduled for venography (HAV-C) blindly underwent a combined transcranial and extracranial colour-Doppler high-resolution examination (TCCS-ECD) aimed at detecting at least two of five parameters of anomalous venous outflow. According to the TCCS-ECD screening, patients and HAV-C further underwent selective venography of the azygous and jugular venous system with venous pressure measurement.

Results: CDMS and TCCS-ECD venous outflow anomalies were dramatically associated (OR 43, 95% CI 29 to 65, p<0.0001). Subsequently, venography demonstrated in CDMS, and not in controls, the presence of multiple severe extracranial stenosis, affecting the principal cerebrospinal venous segments; this provides a picture of chronic cerebrospinal venous insufficiency (CCSVI) with four different patterns of distribution of stenosis and substitute circle. Moreover, relapsing-remitting and secondary progressive courses were associated with CCSVI patterns significantly different from those of primary progressive (p<0.0001). Finally, the pressure gradient measured across the venous stenosies was slightly but significantly higher.

Conclusion: CDMS is strongly associated with CCSVI, a scenario that has not previously been described, characterised by abnormal venous haemodynamics determined by extracranial multiple venous strictures of unknown origin. The location of venous obstructions plays a key role in determining the clinical course of the disease.

No, that was the paper from the April 2009 edition.

CureOrBust wrote:

Boreas wrote:... the fact that Dr. Dake was not allowed to talk in the documentary.

Huh? I didn't read of this. Whats this about?

well at least that's what I understood from Joan's posting - sounds a bit cryptical, admittedly

cheerleader wrote:Trust me, Dr. Dake wanted to be part of this...someday the story will come out. Would love to tell, but can't. Stanford decided it was better if he didn't speak out
cheer

Well, now there is new material on the jvs site, but nothing from Prof. Zamboni. One can only speculate as to why the publication is postponed (or even cancelled?). Anybody got any information on that?

Per my neurologist who is waiting for this paper. She inserted the following Abstract into her email to her patients:

Dr. Zamboni's paper soon to be published in the Journal of Vascular Surgery


Abstract:
Objective: Chronic cerebrospinal venous insufficiency (CCSVI) is a vascular picture characterized by combined stenosies of the principal pathways of extracranial venous drainage, including the internal jugular veins (IJVs), and the azygous vein (AZY), with development of collateral circles and insufficient drainage proved by increased mean transit time in cerebral MRI perfusional study. CCSVI is strongly associated with multiple sclerosis (MS), a neurodegenerative disease considered autoimmune in nature. Aim of this study is to evaluate the safety of CCSVI endovascular treatment and the influence on the clinical outcome of the associated MS. Methods: Sixty-five (65) consecutive patients affected by CCSVI subdivided by clinical course of MS into 35 with relapsing remitting (RR), 20 with secondary progressive (SP), and 10 with primary progressive (PP), underwent percutaneous transluminal angioplasty (PTA). Mean follow-up lasted 18 months. Vascular outcome measures: postoperative complications, venous pressure, patency rate. Neurological outcome measures: cognitive and motor function assessment (MSFC), rate of MS relapse, rate of MRI active positive enhanced gadolinium MS lesions (Gad+), QoL MS questionnaire. Results: Endovascular treatment of CCSVI was feasible in Day Surgery with a minor and negligible complication rate. Postoperative venous pressure was significantly lower in the IJVs, and in the AZY as well (p<0.001). The risk of restenosis in the IJVs was higher as compared to the AZY (IJVs patency rate 53%, AZY patency rate 96%, respectively: OR 16, 95% CI 3.5-72.5 p<0.0001). Clinical outcome measures of MS were significantly improved by CCSVI endovascular treatment, especially in the RR group: rates of relapse- free patients passed from 27% to 50% postoperatively (p<0.001), and that of MRI Gad+ lesions from 50% to 12% (p<0.0001); MSFC at one year improved significantly in RR (p<0.008), but not in PP or SP; finally, physical QoL improved significantly in RR (p<0.01) and in PP patients (p<0.03), with a positive trend in SP (p<0.08). Mental QoL showed significant improvement in RR (p<0.003) and in PP (p<0.01), but in SP did not. Conclusions: PTA of venous strictures in CCSVI patients is safe, and especially in patients with RR clinical course demonstrated to positively influence clinical and QoL parameters of the associated MS respect to preoperative assessment. Restenosis rates are elevated in the IJVs but very promising in the AZY, suggesting the need to improve endovascular techniques in the former. The result of this pilot study warrants a subsequent randomized control study.

edited for dbl posting, sorry!

This just in from the live web QA with Avis:

Avis Favaro & Elizabeth S: Thank you Jamie. We're hearing similar questions from many patients. Our suggestion is to print off the scientific studies Dr.Zamboni's team has published - the latest study on the 65 patients treated will be posted on our website later today. We just got permission from the Journal of Vascular surgery to post it. Educating doctors is important since this is a very very new concept for everyone. Discussing it with local M.S societies is also important. They will be able to fund scientists who propose quality projects.

11:17
Avis Favaro & Elizabeth S: Many of the details of the study will be in the paper - and we have been waiting for permission to post it so everyone can look at the breakdown. But Basically, the University of Ferrara team treated three types of MS patients
11:18
Avis Favaro & Elizabeth S: 65 patients in Total.
11:18
Avis Favaro & Elizabeth S: 35 Relapsing remitting 20 secondary progressive and 10 Primary progressive.
11:18
Avis Favaro & Elizabeth S: The results were roughly as follows
11:18

[Comment From Stacy Roten]
What is the name of the test that determins if the veins are narrowed and can people with MS request to have this test done by their Neurologist here in the US
11:19
Avis Favaro & Elizabeth S: Post op complications from the endovascular (balloon) treatment were negligible.
11:19
Avis Favaro & Elizabeth S: venous pressure dropped, significantly lower in jugular and azygous stenotic patients
11:21
Avis Favaro & Elizabeth S: Restenosis - 53% of Jugular patinets remain unblocked at 18 months 96% of azygos patients were unblocked at 18 months. Rate of MS relapse - relapse free patients went from 27% to 50%. Rate of MS leisons dropped from 50% to 12 per cent. Quality of life improved for most, but there were some differences in the primary progressive and secondary progressive. His conclusion the treatment was safe and seemed to show benefits and that the results warrant further study.

Here it is!!!

http://www.ncbi.nlm.nih.gov/pmc/article ... ool=pubmed

daniel wrote:Here it is!!!

http://www.ncbi.nlm.nih.gov/pmc/article ... ool=pubmed

I believe this is the April paper.

yeah my bad, I jumped the gun hehe it said updated Nov 7 and I missed the whole '2008' part =) Anyhow it should be posted on the W5 site today