It was on October 19 that Mahir Mostic, 35, of St. Catharines, Ontario, died in Costa Rica of complications from a controversial treatment for multiple sclerosis (MS) performed in a Central American clinic.
Now a month after his death, details of what went wrong are finally becoming known.
According to CTV, Mostic traveled to the Clinica Biblica hospital in San Jose, Costa Rica in June to undergo a controversial treatment for his MS — an experimental treatment not automatically covered by the Canadian health care system.
The CBC reports Mostic paid $30,000 to go to Costa Rica for the CCSVI treatment, commonly referred to as "liberation therapy", based on the work of Dr. Paulo Zamboni, a vascular surgeon at the University of Ferrara in Italy.
As reported by the Multiple Sclerosis Trust, Zamboni's CCSVI theory — chronic cerebro-spinal venous insufficiency — suggests that an abnormal narrowing in the veins carrying blood from the brain causes a build up of iron which crosses the blood-brain barrier damaging cells in the central nervous system.
Mostic had a mesh stent inserted into a neck vein to counter the alleged affects of CCSVI. Vascular surgeon Dr. Sandy McDonald, of Barrie, Ontario, told CTV that he understood there were complications right from the start. It seems the procedure had to be redone the day following the initial operation. Inside Costa Rica reports that Mostic had to be operated on three times in total to have the stent inserted successfully.
Interestingly, at the American Academy of Neuroloy's annual meeting in Toronto in April, the father of CCSVI, Zamboni himself, warned against using stents to treat the condition — too risky. Zamboni prefers balloon angioplasty for opening the neck veins and increasing blood flow.
Screen Grab: Clinica Biblica, Costa Rica
The Clinica Biblica hospital in Costa Rica is a very modern facility.
Even Dr. Marcial Fallas of Clinica Biblica has said his clinic normally doesn't use stents because of the risk. This was explained to Mostic and he accepted the risk.
The first reports showed some improvement in Mostic's condition, but his health quickly deteriorated. An ultrasound revealed a blood clot blocking 80 percent of his stented vein. Unable to find a specialist to see him in Canada because of concerns about his out-of-country treatment, Mostic returned to Costa Rica. This added a further $8000 to the cost of his care.
Mostic died in Costa Rica after doctors attempted to dissolve the clot. It is reported that Fallas thinks the powerful medication used may have triggered internal bleeding.
In Canada the first Canadian clinical trials of the contentious procedure are to be conducted by Saskatchewan but one Canadian researcher has already expressed doubts. The Star Phoenix quotes Dr. David Spence, director of the Stroke Prevention and Atherosclerosis Research Centre at the Robarts Research Institute in London, Ontario, as saying:
"I think the hype has been so tremendous that the study needs to be done. But it's extremely unlikely they'd find anything. Everything we know about (multiple sclerosis) suggests that blocked veins don't have anything to do with it. It would be wonderful if it turned out to be true. But (the procedure) is taking advantage of people by offering false hope. People should only have this kind of therapy when it's shown to be effective, not when it's done by unscrupulous charlatans." [This quote should not be construed to directly reflect on the treatment given Mahir Mostik.]
The Saskatchewan clinical trials should be done on more than 1,000 patients, Spence said, in a randomized, controlled trial to minimize the placebo effect because of how subjective and anecdotal the results of the procedure are.
"The findings have to be objective findings — not just reports of feeling better or feeling less depressed or less tired," he said. "Belief does not qualify as evidence. The plural of anecdote is not data. No matter how strongly people believe this works it doesn't qualify as evidence."
Screen grab: YouTube
A champion of the experimental therapy, Dion Oxford talks about living with MS.
But anecdotal evidence can be powerful and persuasive. Another Canadian, Dion Oxford, has had the controversial treatment and has taken a well publicized active role in promoting the CCSVI approach. The Dion Oxford story can be found on YouTube.
Yahoo! News reports: "Dion Oxford, a multiple sclerosis patient, says his health has improved since he received treatment at the same clinic where Mahir Mostic died." A CBC video featuring Oxford is no longer available on the Yahoo site. No reason is given.