MS treatment in Costa Rica: Medical miracle or just common sense?

Share

The Canadians sit around the hotel pool,basking in the sun and sipping alcohol-free fruit drinks as they recover from their treatment. These are not rich retirees jumping the medicare line; nor are they here for nose jobs, breast implants or hip replacements, long the staples of medical tourism.

They have come south, and invested $12,900 U.S. plus airfare, to spend two weeks undergoing an experimental and highly controversial treatment for multiple sclerosis. Some are young but most are approaching middle age, and include farmers, miners, teachers and homemakers as well as a game warden and a bus driver. Many rely on wheelchairs, motor scooters or canes and, to get here, some had to swallow their pride and accept charity. Others took out loans, drained their savings or sold off precious campers and boats.

But most insist they are very pleased with the results.

"My neurologist told me I'd be sitting in a chair, thumbing a remote control watching TV for the rest of my life - as long as someone put the remote in my hand," says Carin Schooley, 49, of Hinton, Alta., who has been nearly immobile and confined to a wheelchair for 17 years.

"Well, the other day I managed to feed myself a French fry, on my own, for the first time in years. I hugged my daughter. I don't know how far it will go, or how long it will last, but it's the first positive news I've had in years."

She is not alone. Most patients report that feeling has been restored to their extremities - their feet, for example, feel like they've thawed - and they have clearer heads and more endurance than they've had in years.

At first glance, all this seems to justify the decision made by hundreds, if not thousands, of Canadian MS patients to leave home in search of the procedure devised by Italian doctor Paolo Zamboni to improve blood flow to the brain.

But the real story may be much more complicated.

Skeptical medical experts back in Canada feel that the Zamboni procedure is untested and dangerous. They also suspect that any relief may be short-lived and as much the product of who the patients are and the fact that better cranial blood circulation isn't the only treatment they receive in San José.

As well as being of ordinary means, most of the 20 patients say they have come to Costa Rica - where Clinica Biblica has treated more than 300 Canadians since June - largely because they lost faith in the system at home.

Almost all of the patients testify that the trip south has provided them with their first pleasant medical experience in years, with attentive specialists, daily physiotherapy and doting nurses who closely monitor and encourage them.

Research tossed in garbage

In contrast, many describe the relationship with their Canadian neurologists (the lead caregivers for most MS sufferers) as hostile, especially if they're too inquisitive about the Zamboni method.

Many say their specialists don't even know they're in Costa Rica. "My neurologist threw my research in the garbage and told me to get out of her office," says Linda, who is from London, Ont., and doesn't want her last name published because "I might not have a doctor when I get home."

She comes from a place big enough to have a teaching hospital, but most of the others live in communities too small to offer MS patients much support. Canada's three biggest cities account for one-third of the country's population, but only two of the 20 who are here: one from Vancouver and the other from Montreal. There is no one from Toronto, but two people hail from tiny Hague, Sask.

Also from Saskatchewan, Tammy Welte is the third person since last summer to make the trip from Richmound, Fox Valley and Golden Prairie, adjacent villages west of Saskatoon with a total population of 489. That gives them one MS case for every 163 residents, almost triple the national average.

"People don't know how big it [MS]is in Saskatchewan until they see it here," Mrs. Welte's husband Wade says as she rests. "Nobody wants to be a burden, so people don't tend to talk about it. They just go home when they get tired."

As they sit around the pool swapping stories, many patients find themselves with a group of kindred spirits for the first time - small towns rarely have support groups - and some are making their first journey outside Canada. (Others, such as Ms. Schooley from Hinton, have tried unorthodox treatments in other exotic locales, such as Mexico and the Bahamas.)

Many accuse the medical profession and the "MS industry" of conspiring to keep them sick and profitable. Several have stopped taking medication - as much as $3,000 worth every month. Drug plans covered most of the cost but did little to cushion miserable side effects.

"If this gets cured, thousands of people are going to lose their jobs," Ms. Schooley says. "I don't know if it's bureaucracy or what, but there's a reason they don't even want to hear about this treatment. It's helping people and they don't want to hear that."

Ed Klimek, president of the Association of Ontario Neurologists, confirms that many of his members are at odds with their patients over the Zamboni option. The pressure has grown so intense, he says, that at least two neurologists have resigned from MS clinics.

Patients, he explains, "are mad, and I don't mean crazy mad. I mean angry. My colleagues are characters who have been in practice for many years, who are upright, good guys, conscientious, who have just thrown in the towel. They've said, 'I can't spend all day discussing this issue with people and talking to a brick wall.' "

Dr. Klimek admits it might have been wiser had neurologists pushed to have the procedure tested properly, rather than simply oppose it. Ottawa spends a billion dollars a year on medical research and Zamboni has undergone none of it.

"Can you imagine a pharmaceutical company saying, 'We're not sure what this pill does, we're not really sure if it hurts you or not, we're not sure how it works, why don't you buy it off us?' " he asks. "Would any government agency say, 'That's okay by us'?"

Anecdotal evidence suggests that, just as MS is known as the snowflake disease because no two patients seem to have the same symptoms, the Zamboni treatment seems to bring different results to different people. Some wind up with clearer minds or better vision while others report suddenly improved use of hands and legs. But veins frequently narrow again and many of those who get better don't stay that way.

Nobody knows for sure what causes the improvements, or whether they will last, but the patients here are well acquainted with the term "placebo effect" and are enraged by any suggestion it's all in their heads.

Experts look at the level of treatment offered here - and organized by Passport Medical, a Vancouver-based health-care travel specialist - and note that the two-week program goes far beyond the simple outpatient care provided by most clinics.

For example, there are daily physiotherapy sessions, and therapist Gabriela Chinchilla says she was stunned to learn most of her patients have never done physio, something that would seem basic for a degenerative disease such as MS.

But Dr. Klimek says the added service makes it even more difficult to assess how effective the Zamboni treatment is. "Wouldn't you feel better if you spent two weeks getting this kind of care in a four-star resort," he asks, "no matter what your problem was?"

The contrast, he adds, points to gaps in the Canadian system, which uses physiotherapy more for acute injuries, such as broken bones and torn ligaments. "Everybody might have some benefits from aggressive rehabilitative activity, but the funding for chronic disease is woefully inadequate ... the money is just not there."

Gayle Caswell, 54, of Midhurst, Ont., says her balance is better and her toe-slapping limp (known as dropfoot) has all but disappeared. But based on her experience here, she believes physiotherapy will be a key to continuing improvement.

"I didn't think I needed physio - my issues weren't that bad. Now I'm so thankful I did it here. It's been extremely beneficial."

'Why not try?'

Until a proven, reliable treatment is found and gains acceptance, patients know they face an unrelenting decline to infirmity. For some, the inevitable unfolds slowly: Bob Perkins, a retiree from Turtleford, Sask., has had MS since the 1970s and can still hobble around the hotel with the help of a cane.

At the other end of the spectrum is Andrew Durso, an energetic and witty 27-year-old racked with tremors. Diagnosed just three years ago, he is now confined to a wheelchair and requires a catheter. His father also suffers from MS, but his disease has progressed much more slowly.

Perhaps surprisingly, Mr. Durso is one of the few patients who has little bad to say about the care he receives back home. He can no longer work but is still employed by Parker Hannifin, an industrial hydraulics company that helped him move home to Montreal from Calgary so he could be close to his family.

A computer whiz with a gift for writing (his blog can be found at wakingseconds.wordpress.com), he has conducted extensive research of MS treatment options and remains skeptical about the Zamboni approach. He was one of the few to report little improvement immediately after the operation, but says he still has hope. Besides, he says, his precipitous decline left him with little choice.

"My neurologist said there was nothing he could do to stop me," Mr. Durso says. "His thought was that people coming here are healing themselves with the power of positive feeling. I can't really argue with that, I myself am a bit skeptical. But I figure why not try.

"The mind is such a powerful thing."

Les Perreaux is a member of The Globe and Mail's Montreal bureau.