CALGARY - Jessica Williams already believes in the controversial treatment for multiple sclerosis known as liberation therapy. Kathy Collins is optimistic, but not totally convinced that it is safe.
Both women have agreed to participate in a new web-based study in Alberta that will involve consulting with MS patients as a precursor to clinical trials that could begin within the next couple of years.
"MS in an unpredictable disease. You can't ever do anything so this gives you a feeling of doing something," Williams said Wednesday.
"If we prove CCSVI (chronic cerebrospinal venous insufficiency treatment), then you're one of the people who started out helping getting answers to get the trials going."
Many Canadian MS patients have travelled overseas to find clinics willing to provide the treatment invented by Italian physician Paolo Zamboni, which uses balloon angioplasty to open up blocked veins in the necks of those who suffer from MS.
Williams, 32, paid more than $5000 out of her own pocket for the procedure in Frankfurt nearly a year ago. Suffering from fatigue, imbalance, chronic migraines, lack of co-ordination and vision problems, she had the 70 per cent blockage in her right jugular removed and has noticed the difference.
"The whole thing takes 15 minutes," she said. "I have better balance. I can wear heels again and I don't get migraines any more."
The federal government plans to fund a preliminary clinical trial of liberation therapy but has warned it could be years before it would be widely available in Canada.
Alberta's study will include a self-administered online survey that patients will fill out at six, 12, 18 and 24-month intervals. Participants will include those who have had liberation therapy in the past or intend to have it in the future, said Health Minister Gene Zwozdesky.
"People who have had it have come forward with some overwhelming accounts of improvements to their mobility and in general to their quality of life," he said. "And while these wonderful testimonials are a joy to hear, we also hear about the other side -- people who have suffered and had adverse effects, and in a few cases even experienced death."
Earlier this month, a Calgary man revealed that his wife died after having the treatment at a California clinic.
"Procedures for Zamboni tend to vary a great deal from one clinic to another around the world. As a result, we're being very cautious in Canada before any endorsements are made for any clinical trials," Zwozdesky said.
The province has earmarked up to $7 million for the clinical trials once it is deemed to be safe.
Dr. Luanne Metz, the Calgary MS Clinic director and lead researcher, said there is no political agenda involved.
"People who have had CCSVI treatment might be concerned that the information that we gather aims to disprove the value of this therapy and I can assure you that is not the case. This survey is not capable of proving or disproving the treatment," she said.
Metz said it is important to look at the several different kinds of liberation therapy which can include angioplasty, the insertion of a small tube into narrow arteries, or a combination of both. Some patients are put on blood thinners and others are not.
"Only by looking at a large group of people who've had many of these different variations can we compare the results and the safety of the different procedures in order to get enough information that we would know where to start in building a clinical trial."
Collins said she is excited about the anecdotal evidence she's been hearing about the treatment. But at age 60, even with her condition getting worse, she wants to find out if the procedure is safe.
"My situation is I am pacing myself and so far I have the luxury of waiting for a safe ethical study and this is part of what Dr. Metz is doing," she said. "It does scare me absolutely and I think that's why I'm very supportive of this."
