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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

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

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

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.

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

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.

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.

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.

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.