Friday, 18 January 2013 10:15

MS advocate continues to fight for treatment in Saskatchewan

Written by  Matthew Liebenberg
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An advocate for multiple sclerosis (MS) patients in Saskatchewan is determined to continue her efforts to ensure improved medical care for people suffering from chronic cerebrospinal venous insufficiency (CCSVI).

This medical condition is considered to be the result of blocked veins in the head and neck that reduces blood flow from the brain and spinal cord. CCSVI and the liberation therapy used to improve blood flow have been highly controversial since it was described by Italian vascular surgeon Dr. Paolo Zamboni in 2008.
Beechy’s Michelle Walsh, 39, was diagnosed with MS when she was 18-years-old. She became a vocal proponent of the CCSVI treatment after travelling to Bulgaria in July 2010 to undergo the liberation procedure, which made a real difference to her quality of life.
“I thought if there’s one person that can feel better because of me being so outspoken about this, then it’s worth it,” she said.
She lives on a farm near Beechy with husband Chris and their three young children, William (5), Mackenzie (3) and one-month old James. She feels it is also important to set an example to her children that one must go after something if one believes in it and wants to make a difference.
Initially, her MS symptoms were mild and for many years she was able to lead an active life. She was active in rodeo, became rodeo queen at different events and participated in the Miss Rodeo Canada finals in 1994. She then pursued a career as an airline flight attendant that took her across the world, but then her symptoms became more pronounced in 2004.
“I actually woke up one day and I didn’t have any vision in one eye … and then the next day the other eye started to act up,” she recalled. “I had problems with my vision for months and months and I had to go on short-term disability.”
She had to make the difficult decision to stop working. In the spring of 2009, her neurologist confirmed she was moving into the secondary, progressive phase of MS and she was fitted for a wheelchair.
Watching a television program about liberation therapy on Nov. 21, 2009, became a turning point for her.
“It was the first time in my life after being diagnosed that I had hope,” she said. “I didn’t think it was a cure, but I at least had hope that there was something out there because there’s not really anything they can do, especially for the progressive stages of MS.”
In addition to the physical improvements she experienced after undergoing the treatment in Bulgaria in July 2010, she was struck by how many Canadians were there.
“We met five other couples from Saskatchewan who were in the hospital doing the same thing and 80 per cent of the patients there were Canadians,” she said. “It was unreal to see that.”
Symptoms of fatigue and headaches returned some time afterwards and in January 2011, she went to California for a second procedure, when they also treated faulty valves in her veins.
“It was no fault of the doctors in Bulgaria,” she said. “I think they weren’t treating as aggressively as they should have because there was still so much to learn about the procedure.”
She has approached her treatment with great care and did not allow the placement of stents in her veins. As a result she had a third procedure on a problematic vein in the spring of 2012, but there has been no evidence of progression of her symptoms since the initial procedure and she has not used any drugs for two years.
“I’m not a big fan of stents in the veins until they really make something that’s made for the vein because I didn’t know if it would migrate,” she said. “You hear all these stories and especially since there’s no follow-up care in Canada, I did not want to stent in.”
A large part of her advocacy has focused on talking to MS patients and caregivers about the CCSVI procedure.
“I’m not telling them to do it per sé, but just giving them information so that they can make their own mind up if this is something that they want to do or try because I think it’s a personal decision,” she emphasized.
She has been outspoken about the Canadian government’s slow response in establishing clinical trials for the liberation procedure. Liberal Senator Jane Cordy’s Bill S-204 for the establishment of a national CCSVI strategy, which also called for accelerated pan-Canadian clinical trials, was voted down Nov. 22.
“It’s been a political nightmare because the majority of the senators are Conservative senators,” Walsh said. “They have vetoed everything and won’t listen to anything.”
Part of her frustration with the delays is that the CCSVI procedure is similar to treatments for others vascular malformations on people who are not suffering from MS.
“This isn’t controversial, this is venous angioplasty and if I didn’t have MS, I would probably be able to get it here,” she said. “Why can’t my blood veins be fixed because I have the scarlet letters of MS attached to my medical file?”
Saskatchewan was the first jurisdiction in Canada that committed funding towards clinical trials for liberation therapy. The two-year trials started in August 2012 and are conducted by a research team in Albany, New York, for which the Saskatchewan government will provide $2.2 million.
Walsh was asked by the provincial government to be a patient advocate for the trials and she met the medical team in Albany in February.
“I had a lot of questions for them because a lot of these people are my friends that I’ve talked to that have made it into these trials,” she said. “This is a lot of money that we as taxpayers are spending. I was very impressed with how our patients are going to be treated down there.”
Another concern she is still focusing on is the need for follow-up care for MS patients in Saskatchewan who already received the liberation therapy in other countries.
The College of Physicians and Surgeons of Saskatchewan has approved an application by Radiology Associates of Regina to provide the first Doppler ultrasound service to people who have received CCSVI treatment outside Canada. This service was scheduled to start in December.
“That’s a step up,” she said. “Not only do we as patients need access to Dopplers if we need them, but we need to have doctors to clinically see us.”
Walsh is supporting efforts by a Saskatoon cardiologist, Dr. Ruben Rajakumar, to start a follow-up clinic for CCSVI patients in that city.
On Nov. 14, she received a Queen Elizabeth II Diamond Jubilee Medal at a ceremony in Swift Current for her advocacy efforts. While there are still challenges ahead, she has hope for the future and she has came to an important realization.
“I never thought I would be put in a situation where I'd have to fight so hard for healthcare in Canada,” she said. “This is my call, this is why I was given this awful disease, to stand up for people and fight for them.”

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