Woman with MS dies after treatment

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This article was published 08/07/2011 (4894 days ago), so information in it may no longer be current.

CALGARY — A Calgary woman is the second Canadian to die after having an experimental vein treatment for multiple sclerosis.

Within hours of having her neck veins opened at a California clinic on April 13, Maralyn Clarke, 56, suffered a massive brain hemorrhage.

“This procedure was supposed to turn her life around,” her husband, Frank Lamb, said in an interview Friday.

“I deeply regret she’s not here and in hindsight I wish she hadn’t had the procedure.”

Lamb said his wife decided to undergo the controversial “liberation” treatment at Synergy Health Concepts Inc. after attending a Calgary seminar earlier this year organized by doctors from the Newport Beach, Calif., facility.

“Something like this was never supposed to happen,” he said.

“The only way I could have stopped her from getting this treatment would have been to tie her up.”

The so-called “liberation” procedure, developed by Italian neurologist Paolo Zamboni, involves opening up blocked veins.

Zamboni’s theory is that stenosis, a narrowing or blockage of veins in the neck that drains blood from the brain, results in a medical condition known as CCSVI, or chronic cerebrospinal venous insufficiency, which may cause MS symptoms.

Removing the blockage — using a procedure similar to balloon angioplasty known as PTA, or percutaneous transluminal angioplasty — is said to improve blood flow, which in turn improves balance and walking, while reducing dizziness, fatigue, muscle spasms and incontinence.

While the procedure cost $12,000, Lamb said his wife was hoping it would help alleviate the MS symptoms she had suffered for two decades and allow her to return to work as an X-ray technician.

In the recovery room after the surgery, Lamb said, his wife had extremely high blood pressure. After staff gave her medication, she was discharged.

Within hours, she began experiencing an extreme headache, nausea and vomiting and was taken by ambulance to a nearby hospital.

Lamb said she was taken off life support on April 18 after doctors determined she had suffered irreversible brain damage.

“No one ever mentioned this was a risk,” Lamb said.

“I wonder if things would have turned out better if she’d been able to receive the treatment in a proper hospital.”

Despite his wife’s death, Lamb said he agreed with a Canadian government panel that last month recommended funding clinical trials of the treatment.

The Conservative government announced on June 29 it would fund clinical trials of liberation therapy for multiple sclerosis patients.

Health Minister Leona Aglukkaq said at the time it had been a “moving experience” to hear from MS patients and their families, and said there is enough preliminary scientific evidence to move ahead with government-funded clinical trials into liberation therapy.

“Our government has been clear that we are prepared to fund a clinical trial, but only when there was sufficient medical and scientific information to support it proceeding safely,” Aglukkaq said.

Canada has among the highest MS rates in the world.

There is no known cure, but symptoms can be managed.

Last year, an Ontario man died after undergoing the treatment in Costa Rica. Mahir Mostic had surgery in June. Blood clots formed around the stent that was inserted in his neck.

His friends said he couldn’t find a doctor willing to treat him in Canada.

The Niagara Falls, Ont., man returned to Costa Rica in October, where he died soon after he was given medication to dissolve the clots, which may have triggered internal bleeding.

Although many in the medical community remain skeptical of the therapy, hundreds of Canadians have spent thousands of dollars to travel to private clinics and hospitals in countries such as India, Poland and Costa Rica to have it done. In February, Dr. David Hubbard, head of the Hubbard Foundation in San Diego, told Postmedia News that 12,500 liberation procedures have been performed worldwide in more than 50 countries.

 

— Postmedia News