Details are now coming to light about the death of an Ontario multiple sclerosis patient who travelled to Costa Rica for a form of the so-called "liberation therapy."
CTV's medical specialist Avis Favaro, who was the first to report on the controversial treatment and the theory behind it, reported on the Niagara Falls, Ont., man's death last week. At the time, the man's family was not yet ready to talk.
But it is now known that the man's name was Mahir Mostic. The 35-year-old had travelled to the Clinica Biblica hospital in San Jose, Costa Rica in June, seeking the controversial treatment. After his MS symptoms worsened, he returned to Costa Rica where he died, on Oct. 19.
The man's death underscores the confusion surrounding the controversial procedure, says an avowed advocate of the procedure.
Barrie Ont.-based vascular surgeon Dr. Sandy McDonald believes in the potential of "liberation therapy," but says the procedure Mostic underwent was very different from the one devised by Italian researcher Dr. Paolo Zamboni.
Based on a hypothesis that MS is a vascular disease caused by blocked or twisted veins in the chest and neck -- a condition he calls CCSVI -- Zamboni's technique uses balloon angioplasty to widen neck veins and increase blood flow from the brain.
After consulting with the doctor who did Mostic's procedure, Dr. McDonald said it was "nowhere near what Dr. Zamboni describes" because doctors inserted into one of the man's veins a stent, which is a small metal tube designed to keep a blocked vein open
"A procedure was done on one day, and the next day they had a sub-optimal result, so they then stented it," McDonald said.
That appeared to restore Mostic's bloodflow, and he was sent back to Canada. But when his symptoms worsened he was rushed by ambulance to St. Catharines General Hospital. A blood clot had formed around the stent, but he wasn't treated for his complications at that time.
The hospital declined comment on the case.
In October, Mostic returned to Clinica Biblica in Costa Rica seeking treatment. A clot-busting drug was injected into the stent, but Mostic died the next day.
New theory
Zamboni first published his findings about the CCSVI theory in 2009. They flew in the face of the conventional belief that MS is an autoimmune disorder and gave hope to those who have been told there is no cure.
But on Friday, Zamboni said he was deeply saddened by Mostic' death.
"This is really terrible news for me," Zamboni told CTV News.
He's also worried that some clinics will continue to promote the use of metal stents, and that patients who develop complications from the procedure may not receive critical follow-up care.
The research paper he wrote "always recommended not to use stents in the jugular vein, so what was performed is not the methodology that we proposed," he said.
The new "liberation treatment" procedure has not been approved yet in Canada, leaving MS patients seeking relief both desperate and confused.
"The problem with all of this is that there has not been a good randomized, controlled, double-blinded study that says it's either effective or ineffective," McDonald explained. "Nor has there been a trial done that assesses what the risks are or aren't."
Based on advice from the Canadian Institutes of Health Research, and with the support of the MS Society of Canada, Ottawa has announced that it will not fund further clinical trials beyond the ones that are already underway.
Researchers in Canada and the U.S. are nevertheless studying Zamboni's hypothesis -- called chronic cerebro-spinal venous insufficiency, or CCSVI. And Saskatchewan has declared its intention to bankroll clinical trials when researchers are ready.
In the meantime, the MS Society is pleading with medical professionals to help ensure that patients who develop complications from the treatment are able to get the care they need.
"The MS Society believes people with MS who have travelled outside of Canada to receive CCSVI treatment should be allowed post-treatment care and follow-up from the health care system," it said in a statement to CTV News on Friday.
"We feel the health of the individual returning from outside of Canada is critically important."
Between 55,000 and 75,000 Canadians have MS, making the country among the most affected in the world.
With a report from CTV's Medical Specialist Avis Favaro
