CORNER BROOK — Bram Russell doesn't think the study the provincial government had done on the so-called liberation therapy treatment for multiple sclerosis was done properly.
The Corner Brook man's wife, Ada, has been living with the crippling effects of the disease for 17 years.
In January 2011, she underwent the controversial treatment for chronic cerebrospinal venous insufficiency, a theory which asserts that the symptoms of multiple sclerosis can be alleviated by a procedure that opens up veins in the neck that are constricting blood flow.
Russell never regained enough strength in her legs to stop using a wheelchair, but has had renewed energy and upper body strength and other improvements in her quality of life since travelling to India to have the procedure done. Among those improvements was the ability to hold her head up straight after years of it being slumped over on her shoulder because of her weakened neck muscles.
Earlier this month, the provincial government unveiled the findings of a 12-month observational study of 40 patients with MS, 30 of whom had underwent the procedure and 10 who had not.
During the study, participants were examined at one-, three-, six- and 12-month intervals, and their results were compared to baseline results.
Dr. William Pryse-Phillips, emeritus professor of medicine (neurology) at Memorial University and lead researcher of the study, said participants did self-report notable improvements in physical and psychological well-being in the first three months post-procedure.
However, he concluded that, after one year, there were no measurable objective medical changes in the observed patients who had underwent the procedure.
The Russells had applied to be part of the study, but the travel costs they would have had to incur to participate were prohibitive. Bram said he and Ada would have had to go to St. John's on their own dime for the four evaluation checkpoints during the 12-month study.
"It was just too stressful," he said. "If there had been someone here in Corner Brook we could go see, it would be different. For us to go to St. John's that many times just wasn't in the cards."
Russell said the positive changes in his wife are still quite evident 18 months after having the procedure, but that is not reflected in the study's results.
The Russells said they went to India without any expectations and the procedure has given them hope that the lives of some people living with MS can possibly be improved.
"We are always positive that this is going to get better," he said of the couple's unwavering optimism.
He believes there should be trained health care professionals in Newfoundland and Labrador who can do the necessary follow-up examinations for anyone who does choose to undergo the procedure, even if they have to travel abroad to have it done.
He said getting no help from government has been frustrating. He and his wife waited an extra year before deciding to have the procedure done with the hope the provincial government would help them get it done or assist them with the follow-up care.
"(The government) won't do it because they would end up having to pay for stuff people have been talking about all along," said Russell.
In the press release announcing the study results, Health and Community Services Minister Susan Sullivan said the intent of the study was to further the knowledge-base and research around the procedure and the proposed effects it had on individuals with multiple sclerosis.
"We understand that today's news may dishearten some people as we all collectively look to find new treatments and cures for this disease," she stated.
"It is important to remember that this study is but one piece of a greater base of research that is being conducted in many parts of the world, and these results do not preclude Newfoundland and Labrador's involvement in any future national clinical trials involving the procedure."