Dr. Paolo Zamboni, left, and Dr. Robert Zivadinov, right, talk before urging people with multiple sclerosis not to rush out for a new surgical procedure to unblock veins outside of proper clinical trials. (Nathan Denette/Canadian Press)

People with multiple sclerosis should not rush to seek out a new surgical procedure to unblock veins outside of proper clinical studies, says the Italian doctor who first publicized the treatment.

At a press conference and webcast at the American Academy of Neurology's annual meeting in Toronto Wednesday, Dr. Paolo Zamboni, who has theorized that multiple sclerosis may be associated with vascular problems, urged MS patients to follow his advice and not that of "blogger patients."

Zamboni's approach uses angioplasty or ballooning to open blocked neck veins as a treatment for chronic cerebrospinal venous insufficiency, or CCSVI, which he links to MS.

There has been an upswell in demand for the procedure since Zamboni published his research. The procedure is not available in Canada, but more than 20 Canadians have gone overseas for it, where some doctors are using stents to open veins.

Zamboni said he does not recommend the use of stents — small, mesh coils often used to open veins to keep blood flowing freely — because of the high risk of migration of the stents and lack of knowledge about their long-term effects.

Zamboni's collaborator, Dr. Robert Zivadinov, an associate professor of neurology at the University of Buffalo, State University of New York, called the rush for treatment because of enormous interest in the research the "elephant in the room."

"My position is that I do not recommend open-label treatment without proper studies," Zivadinov said.

Vein blockage link unconfirmed

The question of whether CCSVI might apply to every MS patient is an open one, he noted. Zivadinov's study on 500 subjects suggested a prevalence of the condition in 62 per cent of MS patients.

CCSVI was also found in 45 per cent of those with other diseases, while earlier Zamboni had found none. Zivadinov noted the discrepancy may be due to differences in measurement. But it also shows the need to repeat the experiment in a variety of centres, said Dr. Aaron Miller, professor of neurology and director of the MS Center at Mount Sinai in New York.

"I tell my patients frankly I think to undergo an intervention at this point is premature … we clearly need much better information and that I wouldn't recommend it," Miller said in an interview.

Zivadinov called on surgeons and radiologists providing the treatment without their institution's approval to get that approval immediately, because proper procedure is essential in determining if the MS treatment is safe and effective.

Dr. Andrew Common, radiologist in chief at St. Michael's Hospital in Toronto, also recommended that patients considering vein opening do so only in a clinical trial setting in institutions with experienced radiologists and neurologists working co-operatively together.

"We need baby steps," agreed MS patient Michael Augustine, of Toronto, who attended the meeting. "People might not only get hurt, but we might also ruin our chances to turn something potentially very beneficial into something that's no longer viable."

A few years ago, such research findings would be presented to scientists attending the meeting, not simultaneously to the online public, who submitted 7,000 questions for the webcast. Zivadinov said the research work "should proceed under the microscope of public and scientific scrutiny."

All of the panellists continued to stress that people with MS should stay on their current drug therapy.