Science Direct entire June issue on CCSVI

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

Science Direct entire June issue on CCSVI

Postby Cece » Thu May 31, 2012 12:05 pm

http://www.sciencedirect.com/science/journal/10892516

All articles are available for purchase.

Page i

2 Previous Topics

Page ii

3 Table of Contents
Pages iii-iv

4 Introduction
Page 93
Gary P. Siskin

5 Chronic Cerebrospinal Venous Insufficiency and Multiple Sclerosis: History and Background
Original Research Article
Pages 94-100
Michael D. Dake

6 Using Magnetic Resonance Imaging as a Means to Study Chronic Cerebral Spinal Venous Insufficiency in Multiple Sclerosis Patients
Original Research Article
Pages 101-112
David Utriainen, Wei Feng, Saba Elias, Zahid Latif, David Hubbard, Ewart Mark Haacke

7 The Use of Doppler Ultrasound in the Diagnosis of Chronic Cerebrospinal Venous Insufficiency
Original Research Article
Pages 113-120
Sandy McDonald, J. Blake Iceton

8 Catheter Venography and Endovascular Treatment of Chronic Cerebrospinal Venous Insufficiency
Original Research Article
Pages 121-130
Kenneth Mandato, Meridith Englander, Lawrence Keating, Jason Vachon, Gary P. Siskin

9 Intravascular Ultrasound in the Diagnosis and Treatment of Chronic Cerebrospinal Venous Insufficiency
Original Research Article
Pages 131-143
Salvatore J.A. Sclafani

10 Reported Outcomes After the Endovascular Treatment of Chronic Cerebrospinal Venous Insufficiency
Original Research Article
Pages 144-149
Christopher O. Hampson, Gregory M. Soares, Abdel Aziz Jaffan

11 Placebo Power
Original Research Article
Pages 150-152
Katherine B. Knox, Michael E. Kelly

12 Internet-Based Social Networking and Its Role in the Evolution of Chronic Cerebrospinal Venous Insufficiency
Original Research Article
Pages 153-157
Chido Vera, Allen Herr, Kenneth Mandato, Meridith Englander, Lauren Ginsburg, Gary P. Siskin
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Re: Science Direct entire June issue on CCSVI

Postby 1eye » Thu May 31, 2012 5:04 pm

The heartiest of congratulations to Dr. Sclafani and all who got in on this. I am very impressed. Lots of citations!
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Re: Science Direct entire June issue on CCSVI

Postby 1eye » Thu May 31, 2012 5:27 pm

And we must not forget our own Dr. G. Siskin! He did the intro, and his colleagues wrote papers too. The table of contents reads like a Who's Who (Dake, Haacke, MacDonald, Mendato, Englander, Hubbard.) And on, and on. These are guys doing science.
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Re: Science Direct entire June issue on CCSVI

Postby Cece » Thu May 31, 2012 6:46 pm

1eye wrote:The heartiest of congratulations to Dr. Sclafani and all who got in on this. I am very impressed. Lots of citations!

9 Intravascular Ultrasound in the Diagnosis and Treatment of Chronic Cerebrospinal Venous Insufficiency
Original Research Article
Pages 131-143
Salvatore J.A. Sclafani

It sounds like some of what was in his abstracts at SIR, but a full twelve pages of goodness.

abstract of ivus in diagnosis of azygous arch stenoses: http://www.ccsvicare.org/outreach_update02.html
ivus reduces injury during pta of ccsvi: http://www.ccsvicare.org/outreach_update03.html
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Re: Science Direct entire June issue on CCSVI

Postby Cece » Thu May 31, 2012 6:50 pm

The Use of Doppler Ultrasound in the Diagnosis of Chronic Cerebrospinal Venous Insufficiency
Original Research Article
Pages 113-120
Sandy McDonald, J. Blake Iceton
Dr. McDonald was one of the first to treat CCSVI in early 2010, and certainly the first and only in Canada as far as I know, and two years later he is still sidelined, and publishing on the diagnosis using ultrasound but not on the treatment using venoplasty.
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Re: Science Direct entire June issue on CCSVI

Postby Cece » Thu May 31, 2012 7:09 pm

Internet-Based Social Networking and Its Role in the Evolution of Chronic Cerebrospinal Venous Insufficiency
Original Research Article
Pages 153-157
Chido Vera, Allen Herr, Kenneth Mandato, Meridith Englander, Lauren Ginsburg, Gary P. Siskin

Dr. Siskin has published on the topic of the impact of social media on the evolution of CCSVI before. (And he used the word 'evolution' last time too.)
Journal of Vascular and Interventional Radiology
Volume 22, Issue 3, Supplement , Page S110, March 2011
.Abstract No. 257:

The impact of internet-based social networking on the evolution of endovascular treatment for multiple sclerosis (MS) patients with chronic cerebrospinal venous insufficiency (CCSVI)

G. Siskin*, S. Garla, L. Ginsburg, K. Mandato, M. Englander, A. Herr

Learning Objectives
1) To review the common social networking sites used by MS patients to convey information and discussions about the role of endovascular treatment for CCSVI. These websites, as well as their methodology for participation, will be reviewed. 2) To review the advantages and disadvantages of physician participation on these websites. 3) To review the potential use of these websites in practice development and patient communication.
Background
CCSVI is a recently described venous abnormality that appears to be present in patients with MS and may be a cause for the some of their symptoms. Early data demonstrates symptomatic improvement in patients undergoing endovascular treatment for CCSVI. While most new procedures go through a rigorous process of research and investigation before being applied to the mainstream population, these procedure appear to have been rapidly accepted by the MS patient community and is now being performed by many physicians around the world. This is largely attributed to patient demand fueled by the information conveyed by social networking websites. Since this is where almost all patients are receiving their information about CCSVI and venous angioplasty, it is critical for all health care professionals involved in the care of these patients to be familiar with these social networking sites.

Clinical Findings/Procedure Details
Existing social networking websites (eg, Facebook, Twitter, etc.), as well as sites dedicated to MS and CCSVI (eg, thisisms.com, ccsvialliance.org, etc.) have been instrumental in allowing patients with MS to share information about this procedure. These sites, together with the internet-based access that physicians now have with both existing and potential patients, have ushered in an era of communication that has driven a new procedure into the repertoire of a growing number of interventional radiologists.

Conclusion and/or Teaching Points
Social networking websites on the internet have been critical in rapidly advancing the role of venous angioplasty in the treatment of CCSVI in MS patients. Understanding these websites and the role they are playing in increasing the demand for this service is important for phsyicians providing this service.

This was back in March of 2011, and things have calmed down since then, once the initial pent-up demand was served.
I wonder what he came up with as advantages and disadvantages of physician participation on these sites. He has himself posted here only a few times, as gsiskin. Medicolegal risk would be a disadvantage, for the physician. I can think of mostly positives, for us as patients, including learning accurate information that then allows us to pass on that information. And, personally, I enjoy cases that are shared and knowing what the absolute latest knowledge or questions being asked are in this ever-changing -- one might say evolving -- field.

To the extent that the era of communication here on the internet has driven the procedure of CCSVI venoplasty into the repertoire of a growing number of interventional radiologists, I say this is a good thing. We have sped up the process and we have sped up the research. I can tell you the names of the patients who first brought Dr. Zamboni's research to the doctors listed above, to Dr. Siskin and to Dr. Dake and to Dr. Sclafani. Everyone here has played a pivotal role in the discovery, and I am proud of that role.
Last edited by Cece on Thu May 31, 2012 7:18 pm, edited 1 time in total.
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Re: Science Direct entire June issue on CCSVI

Postby Cece » Thu May 31, 2012 7:14 pm

Placebo Power
Original Research Article
Pages 150-152
Katherine B. Knox, Michael E. Kelly

Why does placebo even warrant an article? Do they publish general articles about placebo alongside specific research on superior vena cava syndrome or coronary disease or varicose veins? I am tired, especially after the recent FDA actions, of our disease being singled out for scrutiny and controversy.
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Re: Science Direct entire June issue on CCSVI

Postby 1eye » Fri Jun 01, 2012 6:19 am

I Officially declare today to be the First day of the Rest of my life. Accordingly, after I send the magazine's URL to my fine new General Physician, I am going to ask for a referral to a Neurology specialist, hopefully one closer than Kingston, Ontario. Come to think of it, it is only one day a year, so I guess Kingston would be OK, too. It's a nice drive, in the summer. Then I will take a Rest, Rest Up, give it a Rest, Requeciat in Pacem, Visit the Rest Room, and All the Rest.
Cece wrote:
Internet-Based Social Networking and Its Role in the Evolution of Chronic Cerebrospinal Venous Insufficiency
...
...I wonder what he came up with as advantages and disadvantages of physician participation on these sites. He has himself posted here only a few times, as gsiskin. Medicolegal risk would be a disadvantage, for the physician. I can think of mostly positives, for us as patients, including learning accurate information that then allows us to pass on that information. And, personally, I enjoy cases that are shared and knowing what the absolute latest knowledge or questions being asked are in this ever-changing -- one might say evolving -- field.
I think a lot of the patients (including Those Without), in fits and starts, have contributed to the effort, if not the details of the science. In some cases, yes, I can think of a few who have helped with some details. I think they know who they are. But doctors have also benefited from the participation, criticism, and insights of other doctors on this site. Thanks to all the physicians. Thanks, cheerleader et al.

In case any of you Fellow Desperados have too much False Hope, the Rest is silent, but I may not be. It ain't over till it's over. (Yogi Berra)
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Re: Science Direct entire June issue on CCSVI

Postby 1eye » Fri Jun 01, 2012 6:30 am

Cece wrote:Dr. McDonald was one of the first to treat CCSVI in early 2010, and certainly the first and only in Canada as far as I know, and two years later he is still sidelined, and publishing on the diagnosis using ultrasound but not on the treatment using venoplasty.
And why is that, pray tell? Does he not qualify to run the vaunted Canada-wide clinical trial our federal Ministry of Health is reputed to be planning?
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Re: Science Direct entire June issue on CCSVI

Postby Cece » Sun Jun 10, 2012 4:00 pm

:)

http://tinyurl.com/d43252h

Intravascular Ultrasound in the Diagnosis and Treatment of Chronic Cerebrospinal Venous Insufficiency

Salvatore J.A. Sclafani, MD, FSIR

Techniques in Vascular & Interventional Radiology
Volume 15, Issue 2 , Pages 131-143, June 2012

Abstract

Multiple imaging modalities have been used for the evaluation of chronic cerebrospinal venous insufficiency (CCSVI). These include Doppler ultrasound, magnetic resonance venography, computed tomographic venography, and catheter venography. Although each of these tests is considered to contribute valuable information to the evaluation, each modality has deficiencies, which can impact treatment. Intravascular ultrasound (IVUS) has a role in this evaluation owing to its ability to accurately assess vessel circumference and cross-sectional area in real time. This can aid in identifying significant stenoses and optimizing balloon sizing during angioplasty. In addition, intraluminal abnormalities that may be difficult to see with venography can be identified with IVUS, which can further determine when angioplasty for CCSVI is indicated. Finally, IVUS can identify potential complications of angioplasty, including dissection and thrombus formation, allowing for rapid treatment. As a result, IVUS is an important part of an evaluation for CCSVI and, when available, should be used to identify patients who may benefit from endovascular treatment.

IVUS can accurately assess vessel circumference and cross-sectional area in real time -- the language has gotten fancier on us but the message is the same, which is that IVUS can be used to get exact measurements of the veins. In real-time, during the procedure, which allows for the information to be used during angioplasty.

Other benefits are the ability to see intraluminal or within-the-vein abnormalities that might be missed if only venogram were used and which may warrant ballooning, and the ability to identify potential complications such as dissection and thrombus formation allowing for rapid treatment. That last part, rapid treatment, could be important. If a dissection or tear in the vein is seen after ballooning, which can happen, then IVUS can be used to show if a clot is already forming on the tear, and manual removal of the clot can be performed.

wait, I found it on the science direct site, and it has the images too! this is a better link: http://www.sciencedirect.com/science/ar ... 161200025X
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Re: Science Direct entire June issue on CCSVI

Postby Cece » Sun Jun 10, 2012 4:06 pm

It looks like abstracts of all the articles are available here:
http://www.sciencedirect.com/science/jo ... 92516/15/2

Here is Dr. Dake's:
Multiple sclerosis (MS) is a chronic inflammatory disorder of the central nervous system (CNS) most commonly characterized by focal areas of myelin destruction, inflammation and axonal transection. The multicentric inflammation and demyelination of the brain and spinal cord are associated with variable neurologic symptoms ranging from mild dysfunction to debilitating. Typically, these symptoms are marked by episodes of clinical worsening followed by improvement. The cause of this disease remains unclear currently, but the underlying etiology is generally considered to be immunologically based. Other factors, including genetic, environmental and infectious influences have been implicated, as well. Now recent studies have proposed that extracranial venous obstruction, termed chronic cerebrospinal venous insufficiency (CCSVI) may have a role in the pathogenesis of MS or many of its associated clinical manifestations. It is postulated that venous narrowing affecting one or more of the jugular veins and/or the azygous vein in the chest may be responsible for abnormal blood flow in the veins draining the brain and spinal cord. The abnormal flow may initiate and/or sustain a local inflammatory response at the blood-brain barrier that promote pathological changes within the CNS. This review presents the history of the relationship between the vascular system and MS and explores the background of basic and clinical investigations that led to the concept of CCSVI.
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