Last weekend, Dave Ius rode his bike for the first time in longer than he can remember.
It’s a simple act most take for granted. But for Ius, who has suffered from multiple sclerosis for close to 30 years, it was a milestone.
Ius, who lives in Maple Ridge, is one of the hundreds of Canadians who opted to pay to travel outside of Canada to have a controversial procedure performed to alleviate his MS symptoms.
Dubbed the “liberation procedure,” the treatment was developed by Italian Dr. Paolo Zamboni and represents a radical departure in how MS is understood.
Last month, the federal government announced it would start funding clinical trails for the procedure, based on recommendations from the Canadian Institute of Health Research. The MS Society of Canada has committed $1 million towards the costs of the clinical trials
It’s about time, said Ius, who paid close to $20,000 to fly to Mexico to have the procedure.
“Hopefully our government and medical system finally get their heads around it.”
MS affects 75,000 Canadians, and causes chronic pain, bowel and bladder failure, muscle spasms and speech difficulties. Canada has one of the highest MS rates anywhere in the world.
Since undergoing the procedure last year, Ius said he has regained his mobility, his thinking is clearer, and the pins and needles sensation in his extremities has lessened.
“I’m totally amazed by my progress,” he said. “I was heading for a wheelchair.
“It’s been nothing short of a miracle.”
According to Zamboni’s theory, constricted veins in the neck prevent blood from properly draining from the brain, instead causing blood to pool, which in turn leaves deposits of iron. Those deposits are toxic and trigger the body’s auto-immune system, which attacks them, causing collateral damage in the brain.
Zamboni dubbed the condition chronic cerebrospinal venous insufficiency.
To treat it, a balloon is inflated in the veins that drain blood from the brain to remove the blockage, similar to an angioplasty. The procedure is already widely used to treat vascular conditions such as May-Thurner syndrome and renovascular hypertension.
The federal government decided to move forward with the trails after a working group – established by CIHR last year and made up of some of the top MS specialists, neurologists and vascular surgeons in Canada and around the world – looked at links between neurovascular issues and MS.
The 23-member group unanimously agreed there was sufficient evidence to warrant the trials after analyzing seven North American studies, as well as others from around the world.
“Patients and their families have been calling for the funding of a clinical trial on a treatment to unblock veins,” said federal health minister Leona Aglukkaq.
“Our government has been clear that we are prepared to fund a clinical trial, but only when there was sufficient medical and scientific information to support it proceeding safely.”
Ius is somewhat cynical about the government’s motives for moving ahead with the trials.
“This looks like a political move,” he said. “The government doesn’t want to look like bullies to the marginalized people with MS.”
There is still no publicly-funded, post-operative support for patients who have undergone the procedure outside of Canada.
Ius has had to pay for private treatments at the False Creek Medical Centre in Vancouver to monitor his progress.
The MS Society of Canada repeated its request last week for all levels of government to ensure Canadians who undergo treatment for CCSVI outside of Canada aren’t denied post-operative medical care.