"I would like an opinion on whether you think it is "worth a shot" to try venous angioplasty for chronic cerebrospinal venous insufficiency (CCSVI), especially when you have a progressive form of MS for which there is no other treatment available?" The other was "Why do you think CCSVI only works well the first time"
Answer: There has been a lot written about Chronic Cerebrovenous Insufficiency (CCSVI) and MS, including the treatment of this condition with the so called, "liberation procedure”. This has raised the hopes of many patients and initiated a cottage industry of angiographic intervention by physicians with highly questionable motives. After all the procedure makes a lot of money.
Let me be blunt and straight to the point:
- There is no compelling and reproducible evidence linking CCSVI to MS. My Canadian colleague, Tony Traboulsee, completed his NMSS funded studies using not only ultrasound (the favored technique for many clinicians) but also used angiography, the gold standard for detecting venous irregularities. Venous abnormalities were observed in both healthy controls and MS patients with no difference between the two groups. See bit.ly/1j4FvLF
- The only controlled study of the liberation procedure performed at the University of Buffalo (called the PREMiSe study) did not show any benefit of this procedure. See http://www.buffalo.edu/news/releases/2013/03/021.html
There is no current reason to pursue either evaluation or treatment of CCSVI unless;
- Convincing and reproducible studies determine a link between CCSVI and MS
- Controlled interventional studies (where people are randomized to either treatment or placebo which is usually a sham procedure) demonstrate a benefit of treating these venous irregularities
I understand that there are those of you who feel desperate and will try anything for your MS, but this treatment can be harmful. There have even been deaths directly attributed to the “liberation procedure”. Please avoid evaluation or treatment for CCSVI unless the following conditions are met:
- The evaluation and treatment must be done as part of a formal study, preferably funded by an independent funding source
- As this is not a proven treatment, the expenses should be paid entirely by the study not out of your pocket or by your insurance company
- The study should be approved by an institutional review board (IRB). The investigators should review the consent with you before any testing or evaluation and answer all your questions before you sign. Make sure you keep a copy
- The study should be listed at clinicaltrials.gov if it is valid although this listing does prove the validity of the study in the absence of #1 to 3 as noted above