Liberation doesn’t mean freedom: MS patient

Gary
Gary Kean
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Stephanie Boland’s brand new chocolate Havanese puppy Jersey helps take her mind off living with MS. — Star photo by Gary Kean

BENOIT’S COVE  This time last year, Stephanie Boland was not all that interested in liberation therapy, the controversial new treatment that has helped make living with multiple sclerosis easier for some people.

At the time, the 34-year-old Benoit’s Cove woman was coming through a difficult relapse of her MS symptoms during the winter months.

She was almost ready to finally give up using her wheelchair as much as she had been.

Still, she felt her own experience with the neurological condition had not progressed enough to the point where she needed to resort to some alternative therapy  for which the benefits were still not proven.

She returned to work in late June but had to leave work and revert to using her wheelchair just four days later.

A subsequent MRI showed a progression of her MS and a change in medications left her bed-ridden for two days every time she received a dosage.

That’s when Boland reconsidered the idea of having the treatment that involves opening up narrowed blood vessels in the neck and chest area.

“Things had progressed to the point where I didn’t think I had anything to lose,” she said “So, I began doing more research into it.”

Her further investigation showed that, besides the good news stories of people having their MS symptoms fade away, there were plenty of stories about people who never got the results they had hoped the treatment would bring them.

With her attitude based in the reality that it might not work for her either, Boland was still all for giving it a shot.

“I just thought, if I get something out of it, I do, and if I don’t, I don’t,” she said.

Word spread through Benoit’s Cove and a series of fund-raisers began. In three short months, her friends and family — and the generosity of some people Boland never even knew — had raised the $20,000 she needed to get the procedure done.

She had her name on wait lists at two locations and made travel arrangements to have it done in Costa Rica when they called her first.

She had the procedure, which opened up her left jugular, done in early December. The surgery was followed by nine days of physiotherapy, aimed mostly at strengthening her underutilized leg muscles and keeping the arms she uses to propel her chair in good shape.

“It made a big difference,” said Boland of how she felt after the treatment. “The procedure itself cleared my head. Before I went, I had this glazed-over look, almost like I was stoned on something. As soon as I had it done, my husband told me that look was gone.”

For the next month, Boland was able to get out of her wheelchair more and more.

In January, however, her energy levels plummeted and she found herself back in her wheelchair. She’s still dependent on her wheelchair and, in fact, has since had to renovate her home to make it more accessible because of her prolonged mobility issues.

She still doesn’t know if this is a relapse of her MS, like she has come to expect in the winter months in recent years, or if it’s restenosis — a reoccurrence of the narrowing of the blood vessels she had opened up by the procedure.

“That’s the double-edged sword that I now find about having had this done,” she said. “If something goes wrong, am I getting another blockage or am I relapsing?”

Still, Boland has no regrets about having the procedure done and is actually thinking about getting it done again. Some people she met in Costa Rica — who were mostly Canadians — were there for their second or third treatments.

It’s important, she said, for anyone considering having this done to understand it is only a treatment for symptoms. It is not a cure for MS and there can be disappointment for anyone who expects too much.

“There was one person there whose only benefit was that their eyesight cleared up,” she said. “There was another woman whose speech was very hard to understand before she had the procedure done. After, her speech became very clear, but it only lasted for a few hours.

“I would tell anyone looking at getting it done to manage their expectations and know what you’re doing because, if you’re expecting it to be a cure, it’s not.”

While the government of Newfoundland and Labrador has provided funding for an observational study of MS patients in the province who have had the procedure done, Health Canada has yet to approve the procedure in the country.

Boland would love to see the treatment available in Canada, so it would cut down on the travel costs for those who intend to get it done anyway. In the meantime, she is happy to support the ongoing fundraising efforts of the MS Society to help people living with MS and to conduct research into a real cure.

Boland will be taking part in the MS Society’s annual walk. This year’s walk in Corner Brook takes place May 29.

Organizations: MS Society, Health Canada

Geographic location: Costa Rica, Newfoundland and Labrador, Canada Corner Brook

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  • connie
    May 16, 2011 - 17:24

    It is not a 'cure', many patients re-stenose, many do not, and the procedure is available all over the US (and has been for a year) from very reputable vascular doctors, and it is much safer and cheaper than going abroad! She should go to Vascular Access Center in Tukwila, WA (south of Seattle) and have it done correctly by an expert.