Despite some patients reporting good results, doctor does not recommend procedure
Susan Sullivan, the province’s minister of health and community services listens as Dr. William Pryse-Phillips, emeritus professor of medicine (neurology) at MUN and lead researcher of the multiple sclerosis observational study, speaks to reporters at the Confederation Building media centre Thursday. — Photo by Joe Gibbons/The Telegram
Dr. William Pryse-Phillips said he was unsure about the controversial “liberation” treatment for multiple sclerosis (MS). After a one-year observational study, he’s not unsure anymore.
It doesn’t work, Pryse-Phillips told reporters Tuesday.
“I cannot recommend this therapy on the basis of these results,” Pryse-Phillips said. “I know there have been people who have had this procedure and have felt wonderful about it, and I cannot explain it. In our study, we had no such people.”
In 2009, Italian researcher Paolo Zamboni published research that suggested multiple sclerosis was caused by the narrowing of veins in the neck. By performing surgery on those veins, Zamboni said, MS patients could be treated.
The treatment is not offered as part of publicly funded health care in Canada, but MS patients have been travelling overseas to get the surgery done.
In 2010, the provincial government announced $400,000 for an observational study to assess the results, looking at people from this province who travelled for the procedure.
Health Minister Susan Sullivan bluntly stated they couldn’t find any evidence it worked.
“I can report that in the 30 subjects who underwent the procedure, no measurable, objective benefit was recordable one year after the procedure,” she said.
The study done by Pryse-Phillips did find there were subjective psychological and physical benefits, but he described those as “meagre” compared to the costs and the risks.
“There have been deaths from the procedure — not many, but deaths,” he said.
Sullivan said she had hoped for a better result, but she still considers the money well spent, as it contributes to the body of scientific research.
“We’re disappointed; we certainly had hoped for something better for the patients of Newfoundland and Labrador and worldwide,” she said. “That was how we approached this; we were hopeful.”
Mark Lane paid $4,000 to get the procedure done in Poland, plus the cost of travel to get there. He was at the news conference Thursday afternoon, and he told reporters that he doesn’t regret spending the money.
“I did it as a preventative measure as opposed to reactionary, and I’m quite happy with the results I’ve had,” he said. “I haven’t regressed; I haven’t deteriorated in two years.”
In fact, he said, if he has any symptoms in the future, he’ll get the procedure done again.
“If I start to regress, I’m getting on a plane tomorrow,” he said.
But Pryse-Phillips said he actually believes some of what he saw in the blind observational study actually directly refutes Zamboni’s theory.
In 25 per cent of the patients he examined, as a complication of the surgery on neck veins, clots actually closed the veins off. The closed off veins didn’t make the MS symptoms any worse for the patients Pryse-Phillips looked at.
“Prof. Zamboni would suggest that there should have been worsening of a patient’s clinical state as a result of increased of veins,” Pryse-Phillips said. “Comparing those who did and those who did not have any blockage, I repeat: we found no differences on any parameter examined at any time point.”