This Is MS Multiple Sclerosis Community: Knowledge & Support

Considerations for the CCSVI Collaborative Group

1. What do we know already?
A. MS diagnosis, disease course, symptoms, response to, and safety issues related to immunologically based DMTs
and location of MS damage, which include perivenular lesions.
B. Treatments involving stenosis of the CNS venous system is still a “pilot phase” and will require rigorous research
before commercialization is appropriate.
C. Interdisciplinary collaboration is imperative to delineate both diagnostic and therapeutic issues.

2. What are some of the disputed findings?
A. CNS venous drainage is impaired in MS.
B. Impaired venous drainage is the cause of MS or is related to symptom severity.
C. CNS venous stenosis can be diagnosed accurately.
D. Reducing venous stenosis is beneficial to most MS patients, especially pain, mood, cognition, heat intolerance,
bowel/bladder/sexual dysfunction, and quality of life.
E. Restenosis is unlikely and is (or is not) related to increasing symptoms.
F. Iron deposits occur from venous stenosis, and this iron-induced damage causes inflammation and MS symptoms.
G. Relieving venous stenosis is a safe procedure with minimal risks.
H. The outcomes of fully established CCSVI treatments are well defined and adequate.

3. What is not known about CCSVI and its treatment?
A. The diagnostic algorithm for the definite diagnosis of CCSVI has not been fully delineated.
B. The prevalence of CCSVI in other diseases and “normals.”
C. The efficacy and safety outcomes of CCSVI-treated patients. Much data have not been collected or published.
D. Is CCSVI treatment a disease-modifying therapy, a symptom management therapy, a quality-of-life treatment,
and/or a placebo response? What type of MS would respond to CCSVI treatment?
E. Is CCSVI a hereditary condition?
F. Does MS create CCSVI or vice versa?
G. When, if ever, are stents indicated in CCSVI? Are they safe?
H. What is the risk/benefit ratio and what should MS patients be told before undergoing treatment?
I. What are the long-term benefits/risks of CCSVI treatment?

If CCSVI were a causal factor for MS, then you would like to treat it very early in the disease process, before there is a lot of fixed damage. However, the initial studies do not favor this because CCSVI has been most prominent in secondary progressive MS, suggesting it is a sequelae/ secondary phenomenon of longstanding MS.

Our field has thrived in a climate that enables physicians to use medical devices off-label in the best interest of their patients according to their best knowledge and judgment. Under these circumstances, the endovascular treatment of disease has grown in ways we never would have thought possible. Many of the procedures that are commonly performed today had their start when individuals used their creativity to provide elegant solutions to complex problems with devices used in an off-label manner.