Learn From Death Of Ontario MS Patient, Expert Says
Posted November 19, 2010 4:20 pm.
This article is more than 5 years old.
The death of an Ontario man who developed complications after seeking out a controversial new treatment for multiple sclerosis should serve as a cautionary tale for those thinking of following suit, a leading authority on the disease said Friday.
Neurologist Dr. Jock Murray of Dalhousie University in Halifax said Mahir Mostic’s death highlights some of the risks involved in the procedure, which purports to relieve symptoms of multiple sclerosis by unclogging blocked veins in the neck.
Media reports said Mostic, 35, died in a Costa Rica clinic on Oct. 19. Reports said he developed blood clots months after the initial procedure and died after returning to Costa Rica to seek follow-up treatment.
The procedure he underwent, dubbed “liberation” therapy, was pioneered by Italian vascular specialist Paolo Zamboni and is similar to the procedure used in patients suffering from blocked arteries. A balloon angioplasty is used to widen the vein, which is then thought to relieve a build-up of iron in the brain.
The procedure – often referred to as chronic cerebrospinal venous insufficiency treatment – has not yet undergone clinical trials in Canada, prompting hundreds of Multiple Sclerosis-sufferers to seek treatment in overseas clinics.
Some practitioners have turned to stents – or expandable tubes used to prop veins open – when angioplasty procedures have been unsuccessful, Murray said. It’s a strategy that many professionals – including Zamboni himself – decry as unsafe due to the risk of blood clots, he said.
“Stents are used because a lot of the balloon procedures collapse,” Murray said. “They expand the vein, and then the vein later collapses. So they use stents, which are used in arteries. And the difficulty with that is the flow is lower, and the veins are more thin and collapsable, and so clots form around them.”
Mostic’s case followed that exact trajectory, according to media reports.
Mostic’s Costa Rican doctor, Marcial Fallas Camacho, said Mostic came to the hospital with an advanced case of MS that had left him confined to a wheelchair for a year and a half. Tests revealed that large sections of Mostic’s jugular vein had collapsed, he said, adding balloon angioplasty treatment was not successful.
“Due to this unusual situation, after weighing all options and fully informed of all risks, the patient and companion decided on a further course of treatment that included the use of a stent, (the only case in which we have placed a stent), which is not standard treatment in our program,” Fallas Camacho said in a statement.
Mostic briefly regained the ability to walk in the months between his treatment and his death, Fallas Camacho said.
Calls to Mostic’s family and friends were not returned Friday.
Murray also criticized the treatment approach used to relieve the clots that ultimately developed in Mostic’s veins. Murray said the St. Catharines resident was given “clot-busting” drugs at the Costa Rica clinic, an approach that Canadian doctors will not resort to in these situations due to the high risk factor.
Janet Heisey, a two-time recipient of the procedure and vocal supporter of “liberation therapy,” said Mostic’s case highlights the lack of follow-up care available for those who seek the treatment.
“People go abroad and have face lifts and boob jobs, and if something goes wrong, they get looked after by our medical system and its paid for,” she said, adding such services have not traditionally been available to MS patients who try Zamboni’s treatment.
The Multiple Sclerosis Society of Canada echoed Heisey’s call for more stringent followup protocols.
“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,” spokesman Stewart Wong said in a statement. “We feel the health of the individual returning from outside of Canada is critically important.”
Tim Vail, a spokesman for Health Minister Leona Aglukkaq, said the “liberation” treatment is currently being examined by a panel of experts, which will also hand down potential recommendations for follow-up care.
“The medical community right now, they’re the ones who are looking at it and evaluating on how to treat their patients. I would leave it best to them on talking about how to treat those patients when they come back. It is essential, though, that patients needing critical care receive critical care.”
Heisey, who walks with a cane, received her first treatment at a Bulgarian clinic in June and returned four months later after some symptoms began to re-emerge.
She did not require a stent, but said she would have proceeded with one despite the risks if it meant she could have regained some quality of life.
Heisey said she is still feeling the benefits of her most recent procedure and criticized the medical community for what she perceives as fear-mongering.
“For some reason, neurologists have decided to try and make this a shadowy thing, and scary, and inject a lot of risk into the idea,” she said. “It’s really not a risky procedure. … I think they’re trying to make an issue out of scant facts.”
Murray disagrees, saying the procedure is relatively untested and urging patients to wait until more details are available.
“Patients should not access the medical tourism about this issue,” he said. “They should wait until there’s more research to show the proper method of doing this and whether or not it has any benefit, and what the risks are.”
