Life returns for MS sufferer following U.S. surgery

Posted Mar 24, 2011 By Steph Willems

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Talking with Barrhaven's Sharon Taylor in October of last year, it was clear that the Multiple Sclerosis sufferer was desperate to find a way to escape a future that looked painful and grim.

Besieged with worsening neurological symptoms that made everyday life next to impossible and with a list of available medications that could diminish them exhausted, Taylor saw hope in a new treatment being offered in several countries, including the U.S.

Called the 'Liberation Treatment', the surgery - which has not been approved in Canada - uses a venoplasty to open veins in the neck and correct what is being called chronic cerebro-spinal venous insufficiency, or CCSVI. In extreme cases, stents are placed to hold the veins open, but otherwise it is a low-tech, quick operation that many claim has given them a new lease on life.

Taylor now counts herself as one of these people. After fundraising in the Barrhaven community during the month of November, Taylor traveled to Tampa, Florida where she underwent the CCSVI treatment on Dec. 30.

The procedure lasted 40 minutes, after which Taylor lied down for a couple of hours, and was then re-assessed the next morning. She returned home on Jan. 6, home to Ottawa, and to a new life.

"I've been doing wonderful, absolutely wonderful - it's amazing," she said last week. "I'm a realist, but it worked. I don't know what to say except that it worked for me."

Before the treatment, Taylor had reached the tolerable limit on the MS medication that had allowed her a minor reprieve in symptoms, her neurologist told her there wasn't anything more that could be done for her as far as medications went. Valium was suggested when the dose of anti-muscle spasm medication reached the maximum level - not something a person suffering from bone-crushing fatigue needs, said Taylor.

Things began to improve soon after the treatment.

"My husband came in the recovery room, and noticed right away that my hands and feet were warm again," said Taylor. "My muscle spasms were non-existent the next night. I was on the computer, sitting cross-legged, and I couldn't do that before."

Other symptoms disappeared or, at least, diminished. As a result, Taylor has stopped several medications designed to combat fatigue and muscle spasms and reduced the dose of others.

Her muscle spasms have vanished, though some tremors are still present at night. Once only able to walk short distances with the aid of a cane, she now uses it only for long distances or if she's tired.

When asked what she has planned for the year that she wouldn't have attempted before the treatment, Taylor said a trip and a summer of work at the job she loves is in the cards.

"I'm driving the 14 hours to P.E.I. to visit my family," she said. "I usually fly. Even with my husband driving, I used to not be able to sit very long - I couldn't even get to Greely or the east end."

Before the treatment, Taylor's time working at the Playhouse Learning Centre on Fallowfield Road was limited and sporadic. Now she can't wait to spend the summer there working full-time.

"I'm back to being an energizer bunny," she joked. "Now if I get fatigued, it's for a reason. My cognitive function is back now, too. My head doesn't feel like it's full of cotton. I don't understand all of the medical stuff (concerning the treatment), but I don't care. I had no other options."

Taylor plans to attend a rally on Parliament Hill on May 5 calling on the Canadian government to approve the procedure.

So far, the only action on the subject has been the appointment of an expert panel by the province to advise on how to best care for returning patients who have had the procedure done outside of Canada.

Taylor doesn't understand why the Liberation Treatment shouldn't be an option for those living in Canada.

"Tell me an operation that doesn't include some risk," she said. "I just want it to be available for everyone."

For now, Taylor is reveling in her newfound physical freedom and the reemergence of a social life she had almost forgotten. She told the EMC how "phenomenal" it felt just to be able to go out on a Friday night with her husband and catch some live music.

Meanwhile, her 21-year-old son is finishing a tattoo meant to honour his mother. The first part, done while Taylor was awaiting treatment, had the word 'hope' and the letters 'MS'. Now, he is adding a hand holding the controls to a marionette puppet, the strings in the image are broken, and the puppet is walking away under its own power.
http://www.emcbarrhaven.ca/20110324/news/Life+returns+for+MS+sufferer+following+U.S.+surgery