TORONTO — It hasn’t been proven yet to be useful, but that isn’t stopping people with multiple sclerosis from seeking an experimental treatment that has taken their community by storm.
In the face of a tsunami of requests for information, the Multiple Sclerosis Society of Canada held an information session last week in Toronto to lay out what’s known about the condition dubbed chronic cerebrospinal venous insufficiency or CCSVI.
Officials expressed excitement tempered with caution. But a number of people in the actual and online audiences — the session was webcast — were clear they want to be tested for CCSVI and treated for it as soon as possible.
Cathy Groves of Midland, Ont., was one of them. Groves, who turns 52 this week, has had MS for 16 years.
“I’m really anxious to get it done now,” she said during the meeting. Later she appeared unfazed by the fact that the procedure advocated for treating CCSVI — blockages of veins in the neck that drain oxygen-depleted blood from the brain — hasn’t been proven to help MS patients.
“I just feel that it’s a very little thing they’re going to do — it’s not that invasive,” Groves noted, insisting it would not be as difficult, physically, as two caesarean sections she had.
Yves Savoie, president and CEO of the society, said his organization has faced this kind of eager optimism since word of the new theory about what may cause MS hit the airwaves last fall.
The notion is the brainchild of Italian vascular specialist Dr. Paulo Zamboni, who has theorized that MS is triggered by vascular problems, not an aberrant autoimmune response as is now thought.
Zamboni argued that twisted blood vessels that take blood from the brain cause the condition and lead to a buildup of iron in the brain.
He has said he has treated it by using vessel-opening techniques such as angioplasty that are used to unblock clogged arteries that develop with heart disease.
The professor of medicine at the University of Ferrara calls the experimental treatment “the liberation procedure.”
His test of 65 patients seemed promising and people with the degenerative disease have been keen to explore its potential.
Scientists are racing to study the theory and the Canadian and U.S. MS organizations are joining forces to fund research projects.
But one followup done by researchers in Buffalo, N.Y., has suggested Zamboni’s initial claims may have been overly optimistic. Scanning of the veins of 500 patients there showed only about half had the blockages Zamboni blames for MS. And nearly one-quarter of people who don’t have MS had the clogged veins.
Dr. Jock Murray, a leading Canadian MS clinician, stressed those caveats when he outlined what is known so far about CCSVI.
He repeatedly noted that clinical trials need to be done to see if opening up blocked neck veins is useful and safe.
“The situation here though, is everything has been so rapid that it’s jumped from a hypothesis to a treatment,” Murray said in an interview.
“People aren’t interested in waiting to get those results.”
Murray has written a history of MS and says there have been numerous times over the years that optimism a cure was imminent has swept through the community of patients and their loved ones. He described a roller-coaster-like situation where the highs of hope are followed by the troughs of disappointment.
“It’s very hurtful to the MS population to have this repeatedly happen. And so if this doesn’t play out, you can see from the emotion in the room how hurtful this is going to be to MS patients and their families,” he said.