CCSVI: Three Years Later

Dr. Paolo Zamboni works at his research lab at the University of Ferrara in Italy. (W5 / Avis Favaro)

It has been three years to the day since W5 first aired “The Liberation Procedure,” a ground-breaking investigation into a new condition called CCSVI.

Italian vascular surgeon Dr. Paulo Zamboni proposed a novel theory that MS could be caused by blocked veins in the head and neck, which reduces blood flow from the brain, and opening those vessels with angioplasty could improve symptoms of the disease. His theory was a stunning departure from the conventional theory that MS is strictly an autoimmune illness.

The report drew a flood of calls and emails from thousands of Multiple Sclerosis patients around the world. The story spread rapidly through social media, as MS patients used Facebook, Twitter and personal blogs to start their own online medical revolution.

In the face of scepticism from neurologists, they pushed for immediate access to the new controversial therapy, while unknown thousands traveled to clinics around the world to get treatment for blocked veins in an attempt to relieve their MS symptoms.

Three years later this story is still in the headlines. Hundreds of studies have been published or presented that examine the prevalence of CCSVI in MS patients and whether the treatment is effective. The findings are mixed, with several papers finding no link between MS and CCSVI, prompting one Italian neurologist to declare the theory “dead.”

Other studies of the balloon angioplasty have reported significant improvement in patients’ symptoms. Still other scientists are linking CCSVI to other neurological conditions like ALS and Parkinson’s. The research has raised many questions about healthy blood flow both in and out of the brain and how disruptions may affect proper delivery of oxygen.

There are also questions as to why some patients who are treated with venoplasty improve while others feel no better or worse. And why is CCSVI found in healthy people? Does CCSVI cause MS or is it the other way around?

Right now there are legitimate obstacles to getting good data. Scientists investigating this theory admit there is little consensus or even a standardized approach to CCSVI research. (Researchers often will use different techniques to measure CCSVI and there is no agreement on the best technique to assess the condition.)

CCSVI research is a work in progress. Many patients find that frustrating. But investigations into this novel theory have also moved forward at lightning speed compared to other new medical ideas, largely fuelled by unprecedented patient demands.

There is reason to be hopeful because answers may be coming. Many are waiting the results of two trials:

In the B.C.-led study, patients will receive either angioplasty or a placebo procedure. Doctors will determine if the treatment is safe and effective.

The ultimate goal of both trials is to get rigorous scientific data that will provide patients with the answers they deserve and offer some direction as patients and doctors continue on this remarkable medical journey. Stay tuned.