Research trials in Italy and the U.S. investigating the effectiveness of an experimental treatment for multiple sclerosis have some Canadians reaching for their passports.
The unorthodox theory of Italian vascular surgeon Dr. Paolo Zamboni of the University of Ferrara is that MS is caused by blocked veins in the neck or chest, preventing blood from draining properly from the brain. He has developed surgery to treat the problem.
Dr. Robert Zivadinov of the neuroimaging analysis centre in Buffalo, N.Y., worked on an early study with Zamboni in search of evidence that blocked veins restrict blood flow and lead to iron deposits in the brain.
Now Zivadinov is part of a team at the University at Buffalo that is trying to confirm the link between blocked veins and MS. The team is enrolling hundreds of MS patients from the U.S. and Canada to have specialized neck scans to look for narrowed veins.
The study aims to show whether the condition is present in all MS patients, most or just some, and whether it occurs in people with other neurological conditions.
Many people with MS are desperate to be part of the study on Zamboni's experimental surgery, known as the liberation treatment.
"We have just been contacted by 8,000 MS patients in the last three weeks and this is not stopping," said Zivadinov, also a professor of neurology at the University of Buffalo. Of these queries, 6,500 have come from Canadians with MS who want to be part of the study.
An online petition calls on Health Canada to make the angioplasty-like treatment available immediately.
More groundwork needed
A small study published last month found most of the 65 patients who had the procedure had fewer MS attacks and brain lesions, although the improvement was temporary for about half.
As someone with MS for 30 years, Jean Huntley-Maynard, 72, of Berwick, N.S., understands the urgency.
"I have to restrain myself from getting on a plane and heading for Italy," she said.
Yet researchers like Zivadinov who are most excited about Zamboni's findings don't believe narrowed veins cause MS by themselves. Liberation treatment alone likely isn't a cure, Zivadinov said, adding media reports have been overly dramatic.
"It created a huge interest and hope from MS patients that cannot be fulfilled immediately."
The hype could cause people to shop around for a surgeon to perform the liberation treatment, said Dr. Bianca Weinstock-Guttman, director of the Baird MS Centre in Buffalo, who is also part of the research team.
There are risks to the surgery, and untrained surgeons could cause more harm than good, such as side-effects or poor outcomes, she said.
"We do feel this theory and the science has to go further, but it could be in danger if we have this reaction that is not controlled."
Zamboni's research could lead to a breakthrough, but a lot more scientific groundwork needs to be done first, the Buffalo researchers said.