Bogus Approach To Multiple Sclerosis?

A friend with multiple sclerosis intends to have “liberation therapy” that involves expanding narrow veins in the neck and chest. I have heard this approach has been discredited, but she’s determined – and desperate. What can I tell her?

– June 29, 2017

You’re referring to a theory and treatment advanced by a vascular surgeon in Italy, Dr. Paolo Zamboni, who has suggested that multiple sclerosis (MS) may be due to narrowed veins in the neck and chest that block drainage of blood from the brain. Dr. Zamboni maintains that surgically expanding the narrowed blood vessels can relieve symptoms of the disease. Thousands of MS patients have undergone this “liberation therapy” at considerable cost since it became available in 2009.

Understandably, many MS patients like your friend are distressed and frustrated by a disease for which there’s no cure and no reliable treatment. MS is one of the most baffling of all afflictions – we know little about what causes it and what factors influence its progression and outcome.

Two rigorous Canadian studies have yielded no support for Dr. Zamboni’s theory and treatment. In the first, published in 2014, researchers evaluated 177 adults, 79 with MS, 55 siblings of the MS patients, and 43 unrelated healthy volunteers looking for evidence that might support the theory. They found that only one of the MS patients, one of the siblings and one of the healthy volunteers had any vein narrowing.

The same Canadian team carried out the second study with MS patients who did have narrowed veins. Here, researchers actually tested a procedure to open those veins in a $5.4 million double-blind, randomly controlled trial – neither the patients nor the doctors knew who was getting the actual treatment. The procedure involves first inserting a catheter into a narrowed vein and then inflating a small balloon to expand the blood vessel. Of the 104 participants, only 49 had the actual treatment. The others had a sham procedure – the catheter was inserted but no balloon was inflated. A year later, after evaluating the patients with brain imaging, the researchers found that the outcomes in the patients who had the real procedure were no better than in those who had the sham treatment. MS symptoms, as evaluated by the researchers as well as by patients, were unchanged. The findings were presented on March 8 (2017) at the annual scientific meeting of the Society for Interventional Radiology in Washington, D.C.

Speaking for the research team, University of British Columbia MS specialist Anthony Traboulsee, M.D., voiced hope that the new findings “coming from a carefully controlled, ‘gold standard’ study, will persuade people with MS not to pursue liberation therapy, which…carries the risk of complications, as well as significant financial cost” It has also led to a few deaths. It’s estimated that some 3,000 Canadian MS patients have had liberation therapy, even though it is not available in Canada. Two have died as a result. In the U.S., the FDA has warned patients and doctors to avoid the procedure, noting that there is no evidence that it is either safe or effective.

Andrew Weil, M.D

 

Sources:

Anthony L. Traboulsee et al, “Prevalence of extracranial venous narrowing on catheter venography in people with multiple sclerosis, their siblings, and unrelated healthy controls: a blinded, case-control study.” Lancet, January 11, 2014, doi:10.1016/S0140-6736(13)61747-X

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