One year later, MS patients track their progress
Published Sunday, April 10, 2011 10:00PM EDT
A year later, five Canadian multiple sclerosis patients have reported their progress to CTV News, and there are positive signs for some from a new MS treatment.
Last year, Lianne Webb was flattened by fatigue -- the result of a decade of living with multiple sclerosis. But 14 months after receiving a highly debated treatment known as liberation therapy, Webb says she feels more energetic than she has in years.
Indeed, on a recent afternoon, she was horseback riding; something that would have been unthinkable before receiving the therapy.
"I feel like I have my life back," she said.
Webb is one of five Canadian patients given the angioplasty treatment within the country.
The treatment had been temporarily offered by a medical team in Barrie, Ont., but the program was halted as doctors hoped to launch a formal treatment study.
Still, many other Canadians have since gone abroad to get the therapy, which aims to open the blocked veins in the neck and chest that are blamed for slowing the flow of blood from the brain.
The original interviews ran on CTV's W5 in April, 2010. A year later, Favaro and producer Elizabeth St. Philip visited all five of those patients to ask them about their progress.
Had the treatment helped? How had their lives changed?
For Webb, the difference was obvious.
Previously, she was giving herself daily injections of a drug called Copaxone, but she was still having MS attacks. Webb could work, but she would return home at the end of the day exhausted, unable to do housework and too tired to care for her family.
"I would pass out at 7 at night. Now I am riding many evenings," she says.
Webb says she has stopped taking the MS medications because she has stopped having relapses associated with the condition. She has since bought a horse and a truck, so she can spend time horseback riding, which is one of her passions.
She's also been spending some time on the golf course.
"I feel great," Webb says, adding that while she may still have MS, "I don't have the symptoms."
Two other patients have reported significant improvements, including Matt Maltese, who only one year ago could not walk up a flight of stairs.
These days, he's back to working full-time and is coaching sports again.
"There is no fatigue anymore … I eat more," he says, adding that he wants to return to his job as a physical education teacher.
That success story is shared by Steve Garvie, a patient who one year ago could barely use his left arm and hand. Now, he can lift his 60-kilogram dog with the arm.
"I don't have any fatigue ... I don't have any bladder issues," he says.
Since getting the treatment, he's moved out of government housing and into a new place with his partner. He sleeps better and doesn't take drugs to control his bladder or to alleviate pain.
When asked about suggestions that the treatment has had a placebo effect, Garvie says that's unlikely.
"A placebo lasts a month or two. I am well over a year later, am I a placebo?"
He has also helped set up the CCSVI Foundation which aims to get funding for those seeking the treatment abroad.
CCSVI is an acronym for the disorder, known as chronic cerebro-spinal venous insufficiency.
Less success for others
However, two of the five patients, Sandra Black and Mike Gandhi, have not visibly improved over the past year.
Black got her treatment on Feb. 26, 2010, and she still uses a walker and occasionally a wheelchair.
"I was looking for a miracle and I know it didn't happen. But I do feel good. My fatigue is gone. I wish I had my treatment 15 years ago, before my disease got worse."
Gandhi, meanwhile, has had the procedure twice: first in Canada and then last month in California, after ultrasounds showed that his veins had again narrowed.
Still, Gandhi says his mind feels clearer.
Dr. Sandy McDonald, the vascular surgeon who continues to monitor the patients, is pleased with the results so far, given that there have been no serious complications.
But the doctor says more study is needed.
"We need to do a well-done study to see if the treatment works and make sure it is not placebo. A treatment would demonstrate that it is safe and effective."
Earlier this month, the province of Manitoba announced it would spend $5 million to conduct clinical trials, in addition to a similar pledge made by Saskatchewan.