An Airdrie resident who underwent the controversial “liberation treatment” for Multiple Sclerosis (MS) a year ago, says a recent report by the University of Calgary is “all doom and gloom.”
Gayle Clayton was diagnosed with MS 30 years ago and suffered from debilitating symptoms including excruciating pain, weakness in her left leg and numbness in her hands and feet for at least five years before the surgery.
On Aug. 25, 2010, Clayton went to Cabo San Lucas to receive Chronic Cerebro-Spinal Venous Insufficiency (CCSVI) surgery.
“I didn’t get the results I wanted but it stopped my symptoms from progressing and I haven’t gotten any worse,” said Clayton.
“I’m not sorry I went and I would encourage anyone with MS to look into it.”
The operation remains a controversial surgical procedure. According to Canadian Institutes of Health Research and the MS Society of Canada, the liberation treatment involves an intervention, venous angioplasty that is potentially dangerous and could lead to stroke and heart complications.
A team of researchers at the Hotchkiss Brain Institute at the University of Calgary recently published a case series documenting the complications of MS patients travelling outside of Canada to receive the treatment.
Published Aug. 23 in the Canadian Journal of Neurological Sciences, the research documents the cases of five MS patients who were treated in Calgary hospitals in October and November 2010 after complications from their CCSVI surgeries that were performed in countries such as Mexico, India, the United States and Poland.
“Care providers need to be aware such complications can occur and know what to watch for in patients who have undergone these procedures outside of Canada. This will ultimately improve patient care in this population,” said the lead author of the paper Dr. Jodie Burton, clinical assistant professor in the department of clinical neurosciences.
The report profiles five of the initial CCSVI cases that developed complications including clot formation within stents, stent migration, significant hemorrhage, cranial nerve damage and cerebral vein thrombosis (clots in the veins in the brain). The actual number of MS patients who have sought treatment for CCSVI outside of Canada is not known.
“There are risks for any surgical procedure. I knew there was risks when I had it done,” said Clayton.
“I don’t think five people really represent the whole population of people that have had the treatment.”
The procedure cost Clayton about $15,000 but she said it was worth every penny because she felt a difference in her symptoms the minute she woke up in recovery.
“I have more energy and psychologically it has helped a lot,” she said.
“Just knowing that I took matters into my own hands and tried something, is a big deal.”
Alberta’s Health Department has begun a study to track the experience of MS patients who have received the treatment abroad. Clayton said she looked into the survey but will not be taking part.
“I don’t think the Alberta government is helping anyone with MS,” she said.
“I don’t think they are looking to help us out and they are just doing the survey to save face. This is similar to angioplasty, a proven procedure done for people with heart problems. It is like the people with MS have a throw away disease.”
