Some Canadians with multiple sclerosis who've gone out of country for a controversial vein-opening treatment remain frustrated about trying to get medical support after an Ontario man died of complications from
the procedure.
CBC News reported Thursday that Mahir Mostic, 35, of St. Catharines died on Oct. 19, one day after doctors in Costa Rica tried to dissolve a blood-clot complication.
Mahir Mostic died in
Costa Rica following complications from receiving a stent to open his
neck veins. (Courtesy Bedrana Jelin)He first went to the Central American country in June to have a mesh stent inserted to prop open a vein in his neck in hopes it would relieve symptoms of his fast-moving form of MS.
But after Mostic returned to Canada, his MS became worse and a blood clot formed around the stent.
Mostic's girlfriend, Bedrana Jelin, said specialists in Ontario "didn't want to touch him because he was done outside of Canada."
He died in hospital in Costa Rica after doctors tried to dissolve the clot using powerful medication.
Dr. Marcial Fallas of Clinica Biblica in San Jose, who cared for Mostic both times, thinks the medication triggered internal bleeding.
Fallas said the clinic normally doesn't use stents, but said Mostic was willing to take the risk.
The case points to serious problems in Canada, said Brenda Requier of Edmonton, who went to Poland in June to have her neck veins opened with angioplasty, also known as ballooning.
"First, I was heartbroken for the family," Requier told CBC News Network on Friday. "Then I was actually quite disappointed and disgraced that he was turned away from followup care in Canada. I couldn't
believe this was happening in my country."
Requier, who had difficulty hearing and had been using crutches for years before the procedure, said she now experiences much less fatigue and brain fog and is now walking with a cane.
including life-threatening blood clots, but some Canadians who've had
the procedure say they have no regrets."">Neck vein opening carries
risk of potential complications including life-threatening blood clots,
but some Canadians who've had the procedure say they have no regrets.
(CBC)Many doctors in Canada have cautioned MS patients about the risks of having balloons and stents — which are designed for arteries — used to open up neck veins. The
complications can include life-threatening blood clots.
Dion Oxford of Toronto went to the same clinic in Costa Rica in late June, but said he didn't get the results he wanted. Oxford said he still has numb hands and struggles with walking although his endurance and
balance have improved.
Advice for MS patients
Oxford's advice for MS patients is that vein opening can improve quality of life but few gain an instant fix. He has no regrets.
Mostic's death is sad but not unexpected because there's not enough scientific evidence to suggest the invasive procedure is a safe and effective way of treating MS, said Dr. Paul Hébert, editor in chief of
the Canadian Medical Association Journal.
However, clinical trials could be more successful because doctors are learning more about the risks as well as the benefits of vein opening in MS patients, Hébert said.
Dr. Paolo Zamboni of Italy is a leading proponent of treating multiple sclerosis with angioplasty. His therapy is based on an unproven theory, known as chronic cerebrospinal venous insufficiency, that
blocked veins in the neck or spine contribute to MS.
Zamboni believes that opening blockages in the veins with tiny balloons can alleviate MS symptoms.
Need for evidence
In September, Health Minister Leona Aglukkaq announced that the federal government is awaiting results of studies underway in Canada and the
U.S. before deciding whether pan-Canadian clinical trials on vein
opening in MS patients should go ahead.
"In Canada, the health-care system is based on science and evidence," Aglukkaq said Friday. "The information that we are working through as quickly as we can is essential and critical in order for us to move to
clinical trials."
Mostic's death points to the need for clinical trials in Canada and a registry of people who've had the treatment, said Liberal MP Kirsty Duncan.
"We need leadership from this government," said NDP MP Megan Leslie, who called it "heartbreaking" that people are going out of the country out of desperation and having trouble getting followup care when they
return to Canada.