Before Angela Lavallee travelled to Poland in July to receive “liberation therapy” treatment for her multiple sclerosis, she was unable to lift her right leg more than two inches off the bed.
But a little more than a day after her surgery, she tried the same exercise, and the leg lifted straight into the air.
The 32-year-old former Hanmer resident, who was diagnosed with multiple sclerosis (MS) eight years ago, said her balance was also greatly improved.
“It was shocking and exciting all at once,” Lavallee, said, her voice choking with emotion.
She spoke about her experiences with liberation therapy recently in front of about 60 people with MS and their families at the MS Centre of Hope in Sudbury.
Her symptoms continued to improve as time went on. She walked with a cane or a walker before her surgery, but she said she hasn’t touched either mobility aid since she received the procedure.
“I lifted my leg standing, and I could never have done that,” she said. “I could tap my foot for the first time in maybe two years. I could never have done that.”
MS is an unpredictable, often disabling disease of the central nervous system which is composed of the brain and spinal cord. The disease attacks the myelin, which is a protective covering wrapped around the nerves of the central nervous system.
In November 2009, Italian researcher Dr. Paolo Zamboni made headlines for his new treatment for MS patients, eventually dubbed liberation therapy.
Using Doppler ultrasound, Zamboni began examining the necks of MS patients, and found that almost 100 per cent had a narrowing or blockage of the veins that are supposed to flush blood from the brain.
He called the disorder he found CCSVI, or chronic cerebrospinal venous insufficiency.
Zamboni treated the condition using balloon angioplasty, and found that his patients’ MS symptoms abated or even halted altogether.
However, Zamboni has said all along that further clinical trials needed to be conducted, and recently told the Congress of the European Committee for Treatment and Research in MS that he warns patients against receiving the treatment.
Lavallee, who now lives in St. George, Ont., with her husband, Phil and their two-year-old son, Owen, said she was aware of Zamboni’s warnings before she received her treatment, but decided to go ahead anyway.
She said she’s “walking proof” the procedure works.
Liberation therapy, however, is not currently performed on MS patients in Ontario, which is why many have opted to travel out-of-country to receive the procedure, at their own expense.
I’m hoping I’ll have a lot less difficulty walking, and maybe I’ll even put my wheelchair and walker into retirement.
Sudbury man who lives with multiple sclerosis
Including travel costs for herself and her husband, it cost $12,000 for Lavallee to receive the treatment.
David Jensen, a spokesperson for the Ministry of Health and Long-Term Care, said liberation therapy is not performed in Ontario because it’s still considered to be experimental.
“Certainly, we have a committee that informs us in the latest in technology and services,” he said.
“They’re constantly reviewing the latest research and literature. They said that right now, there just isn’t enough evidence to prove the efficacy of this.”
This past summer, the Canadian Institutes of Health Research (CIHR), in collaboration with the MS Society of Canada, convened a meeting of multiple sclerosis experts to examine research priorities surrounding liberation therapy.
After the meeting, CIHR president Dr. Alain Beaudet recommended to the federal Minister of Health, Leona Aglukkaq, that it would be “premature” to support pan-Canadian trials on liberation therapy.
“There is an overwhelming lack of scientific evidence on the safety and efficacy of the procedure, or even that there is any link between blocked veins and MS,” Beaudet stated, in the press release.
The MS Society, for its part, has set aside $1 million for the day when a pan-Canadian clinical trial surrounding CCSVI does take place.
It has also committed $2.4 million to support seven research projects focusing on CCSVI and its relationship to MS.
Laurel Ireland, chair of the Sudbury chapter of the MS Society of Canada, said the organization is excited about liberation therapy, but believes more research is needed.
“Basically, CCSVI and the liberation therapy is the first hope that MSers have had ever — not just lately — but ever,” she said.
Many with MS have decided they don’t want to live with a disability if they have a choice, Ireland said.
Ireland said her organization brings in speakers such as Lavallee so those with MS can make “informed decisions” about liberation therapy.
She said a group called Angioplasty for All is filing a lawsuit against the Ontario government to make the procedure available in the province for MS patients, she said.
“The basis of their litigation is MSers are being discriminated against,” she said. “The liberation therapy is being subjected to much more stringent regulations in terms of ‘prove me, show me,’ than other similar procedures have in the past.
“Liberation therapy is angioplasty, and thousands are done every year.”
Della Gauthier was among those who attended Lavallee’s talk.
The Sudbury woman received the liberation therapy treatment in Costa Rica in July. All told, her medical, travel and hotel bills added up to between $16,000 to $17,000.
But Gauthier, who was diagnosed with MS in 1993, said it was worth it. Before she had the surgery, her legs and feet were badly swollen. The swelling immediately subsided after the procedure.
“I can wear normal shoes,” she said, smiling and pointing at her feet. “These are my new shoes.”
She said a lot of the fatigue associated with her MS has also disappeared. However, Gauthier still walks with a cane, as her balance has not improved.
“I hoped that would change for me, but so far it hasn’t,” she said. “Walking is probably easier for me, because I have more energy to walk. I can walk much longer than I would have been able to before.”
Gauthier said she’s sent her bill for the procedure to the province, requesting to be reimbursed. She said four of her veins were blocked, and feels that if she didn’t have MS, she would qualify for treatment under OHIP. “It seems like there’s two standards,” she said. “If you don’t have MS, you might get looked at. If you do have MS, you aren’t going to get looked at right now.”
Wayne Mogensen is currently on the waiting list to receive the treatment in Poland.
The 67-year-old Sudbury man said he expects he’ll be able to receive the procedure in January.
He was diagnosed with the condition in 1994, and now spends much of his time in a wheelchair. When asked what he’ll be like in six months, Mogensen joked “We’ll have a dance, maybe.
“I’m hoping I’ll have a lot less difficulty walking, and maybe I’ll even put my wheelchair and walker into retirement.”
Mogensen said he’s frustrated he can’t get liberation therapy treatment in Ontario.
“It’s so maddening,” he said. “Even though I’d be perfectly willing to spend good money to get it done here in Canada, even if it wasn’t covered by OHIP,...the government won’t allow it.”