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Legal fears thwart doctor's bid for 'liberation' from MS pain

Paulette O'Leary, right, holds her daughter Payton's hand as they and her husband, Jason Schuy, and mother Ruth O'Leary walk at Toronto's Pearson International Airport on Wednesday.

darren calabrese The Globe and Mail

Paulette O'Leary already had an IV in her arm when the lawyers arrived.

The 41-year-old Toronto doctor and mother of two had flown to Pennsylvania over the weekend to undergo a controversial "liberation" treatment she hoped would alleviate the symptoms of multiple sclerosis that have plagued her for 22 years. On Sunday night, she and her husband went out for dinner on the instructions of the doctor who would perform the surgery - he was so confident it would work, he had instructed her to celebrate.

But on Monday, the same doctor, a vascular radiologist named Joseph Bonn, sat at her bedside at Lankenau Hospital outside Philadelphia and informed her that he had just been ordered by lawyers to cancel her procedure, as well as those of countless other MS patients who had booked his surgery time solid through to October.

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"I was in shock, because I was so pumped up," Dr. O'Leary said Wednesdaybefore flying back to Toronto. "It's going to be awful when I arrive back at the airport because my daughter's expecting me to run to her, and she's going to see me still walking with a cane."

Dr. O'Leary, a researcher with the University Health Network in Toronto, had paid $18,000 (U.S.) to be just the fifth MS patient, and first Canadian, to be treated by Dr. Bonn.

Since an Italian vascular surgeon named Paolo Zamboni released a study suggesting MS was connected to chronic cerebrospinal venous insufficiency (CCSVI), patients in Canada and around the world have been desperately seeking out doctors who will perform procedures to unblock their veins.

But in the U.S., hospitals are beginning to ban the procedures for MS patients until more research is done, as fears of legal liabilities surface. Dr. O'Leary and others in the MS community worry that this reluctance will force the treatment underground, with people lying about why they need an angioplasty or paying large amounts to receive the treatment overseas.

"People are willing to mortgage their houses for this," Dr. O'Leary said.

A statement released by Lankenau on Wednesday said that while CCSVI "may offer a breakthrough" in the treatment of MS, the hospital is suspending the unblocking treatments until they are approved by its Institutional Review Board.

In December, Stanford University in California also ordered vascular specialist Michael Dake to stop performing a procedure to open the veins of MS patients. Although many of his patients reported improvements in their symptoms, one woman died of a brain hemorrhage on the way home from the treatment, and another patient required surgery after the stent installed to open his jugular vein broke free and floated into his heart.

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Since then, other U.S. doctors who had been quietly performing the procedure - their names spread swiftly by online MS support groups - have been ordered to stop by their legal departments.

In New Jersey, Steven Sclafani was told to cancel all appointments for MS patients, even though he was performing a balloon angioplasty that is commonly used to treat other congenital vein abnormalities, and was not using stents.

"I believe that our IRB understands the importance of this treatment and will not unduly delay their review," Dr. Sclafani wrote on a message board for MS patients.

Denise Graff, a 43-year-old from New Brunswick, N.J., was on Dr. Sclafani's waiting list when his procedures were shut down, and quickly found Dr. Bonn. Last Tuesday, she became his third MS patient to have her veins surgically unblocked. Diagnosed with MS in 1999, she said she felt an immediate change.

"I felt energetic," she said. "The fatigue I had is beyond any tired you've ever known. It's somebody sucking the life out of you. It was gone and I have not felt it since."

But not everyone is convinced. Some critics say such anecdotal reports are the result of a placebo effect.

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Ian Rodger, vice-president of research at McMaster University, St. Joseph's Healthcare, said Dr. Zamboni has simply raised a hypothesis that must now be proved by the research community, something that will take time.

But he understands some MS patients might not be willing to wait. "If I were in their situation, I might well feel the same way," Dr. Rodger said.

The relative safeness of the procedure is what led Dr. O'Leary to seek out Dr. Bonn, whom she learned of through a Toronto colleague. "They're saying it's not tested, but it's an angioplasty," she said.

Dr. O'Leary has learned to live with her disease, but said she needs to try the new procedure, even if it doesn't work. It would not be the first time she's made a difficult and controversial decision regarding the illness.

She gave birth to her two daughters, now four years old and eight months, since her diagnosis. In the last trimester of her second pregnancy, she became temporarily paralyzed from the waist down. To manage her symptoms, she is also taking Tysabri, a drug that has been linked to the development of brain disease.

She is considering a trip to Bulgaria, where an angioplasty appointment will cost her just $8,000, but has been promised by Dr. Bonn that she'll be his first patient once the procedure is approved.

As a doctor, she understands the introduction of novel medical treatments requires precaution and due diligence, but she thinks hospitals could move faster to approve what is already established as a relatively safe procedure.

"I do believe in this liberation procedure, I don't know how it could get much safer," she said. "But they'll have crossed all their t's and dotted all their i's. And I have to agree with that."

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