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Thursday, July 14, 2011 12:26 AM | Ken Torbert Volg link

CALGARY — Roger Laforest had only been back in town for a week when he heard the news: a Calgary woman had died following the experimental vein surgery he had just undertaken to treat his multiple sclerosis.


Not only that, he had attended the same California clinic where, on April 13, Maralyn Clarke suffered a fatal brain hemorrhage — an incident that was revealed publicly this past Saturday.


But Laforest doesn’t regret undergoing the controversial treatment, which is not approved in Canada.


“I would do it again rather than having to go around in a wheelchair,” said the 56-year-old Calgary-based engineer. “I’d rather take the risk.”


For Laforest and what appears to be an increasing number of MS sufferers, an unflinching belief in the so-called “liberation” procedure developed by Italian neurologist Paolo Zamboni means they are undeterred by skeptical medical professionals or even reports of two Canadian deaths.


Mahir Mostic of Niagara Falls, Ont., died last June after undergoing the treatment in Costa Rica.


Despite sometimes shaky evidence about its efficacy and safety, believers are leading the charge to bring the treatment to Canada.


In the meantime, they will travel — to California, India, Mexico, Germany — to get the job done.


Laforest returned to the Synergy Health Concepts clinic in Newport Beach in June because some of his symptoms, such as cold feet and lack of balance, returned three months after his procedure in March.


In total he will have spent $14,000 on the treatment. He says it’s worth it.


“I’m back to 100 per cent. I had 20 years of feeling miserable,” he said this week.


He doesn’t understand why he the procedure has not yet been approved in Canada.


“I don’t know what the reasoning is. It doesn’t make any sense because it’s a real simple procedure.”


It’s a sentiment shared by Gerry Ridler, who heads the CCSVI Calgary chapter of about 250 members.


Ridler’s 53-year-old son has MS and sits in a wheelchair. He also had the surgery in California, but an “excess of fluid” in his brain meant the procedure didn’t work as well, says Ridler.


Still, the 78-year-old is convinced the government should be investing in the treatment.


“It’s high time that the government got off their butt and did something about this,” he said.


“They’ve got nothing for MS patients, absolutely nothing.”


Zamboni’s theory is that a narrowing or blockage of veins in the neck that drain blood from the brain results in the medical condition known as CCSVI, or chronic cerebrospinal venous insufficiency, which may cause MS.


Proponents say that removing the blockage using a procedure similar to angioplasty, which is performed for heart patients, improves the blood flow and symptoms such as balance and walking, reduces dizziness, fatigue, muscle spasms and incontinence.


For now, however, it appears Canadian approval or rejection of the treatment is still years away.


The Alberta government has committed to an “observational study” alongside the University of Calgary and the University of Alberta to gather information on the procedure, with further details to be announced later this month, said Alberta Health and Wellness spokesman Andy Weiler.


“The question now is how do you start gathering that information from a research perspective and start pulling it together so you can make a very informed scientific decision on whether or not treatments like this need to be funded,” said Weiler.


On June 29, the federal government announced that it would undertake clinical trials of CCSVI, although no timeline has been set.


A spokesman for the Multiple Sclerosis Society of Canada in Alberta said the organization recommends the procedure only be done within the context of a clinical trial.


Dr. Luanne Metz, the neurologist who is leading the provincial study and is on sabbatical from her position as director of the Foothills Hospital MS clinic in Calgary, estimates about 1,000 of the 11,000 MS sufferers in the province have undergone liberation treatment already.


About 95 per cent of MS patients address the issue when they see their doctors, she said.


While Metz does not advocate for or against the Zamboni treatment, she said the procedure remains unproven. There are five preventive drugs which have proven beneficial for some patients, she said.


“I’m concerned for the safety of my patients, but I always feel that it’s the patient’s decision to do what they choose to do,” she said.


“It’s a horrible disease. So I understand where people are coming from, but I worry about them. I feel very motherly in that sense. I want them to make their own choices, but it doesn’t mean I don’t hurt out of worry over this.”


lstone@calgaryherald.com