Friday, May 11, 2012

FDA vs. CCSVI: The Safety Alert Has Good Advice

How do you get the world to take notice of a controversial theory and treatment regarding MS and narrowed veins?  You get the FDA to issue a safety warning.

Only if you were completely separated from the online MS community yesterday did you miss the alert coming from the FDA regarding Chronic Cerebrospinal Venous Insufficiency (CCSVI) and the "liberation procedure" used to open narrowed veins.

CCSVI has been discussed widely throughout the MS community since mid-2009 (yes, even before the Canadian news picked it up in October or November that year).  There has been a huge firestorm of patient advocacy which has pushed for treatment...and research...for CCSVI.

True that there are three documented cases of patients who have died following CCSVI treatment, two involving stent migration following early treatment/experiments in California.  Last April, a Canadian woman died five days following treatment in Costa Mesa.

The FDA announcement does not reference any NEW cases of death, but that will not matter to our friends, family, and coworkers who are going to be asking us (or warning us) about the controversial theory/treatment.

The bottom line of the FDA announcement includes:
  • a recognition that more CCSVI research is needed, 
  • patients should thoroughly evaluate the risks before undertaking any new treatment, 
  • doctors should be aware of CCSVI and the balloon angioplasty treatment, and that 
  • patients and doctors should stay in close communication regarding any treatment decisions.
 These are all good words of advice for any health-related decisions we make.

 Read this post in its entirety:

FDA Issues Safety Warning on Controversial CCSVI Treatment

More Brass and Ivory posts discussing CCSVI

1 comment:

  1. Thank you for the update! I hope you are as well as possible! Xo