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OSOYOOS RESIDENTS HEADING ABROAD FOR MULTIPLE SCLEROSIS TREATMENT
OSOYOOS TIMES-February 16, 2011
By Paul Everest – Osoyoos Times
Two months ago, Osoyoos’s Wendi Langsmith and her mother, Cathy Lang, travelled to the southern European country of Bulgaria.
The trip wasn’t meant for sightseeing or to catch up with distant relatives.
It was a chance to regain parts of their lives that had been affected by multiple sclerosis (MS).
Wendi, 39, was diagnosed with the disease in May of 2010, but she knew something was wrong long before as she had begun to feel tingling sensations and numbness throughout her body and it was becoming difficult to walk.
She had watched her mother, who was diagnosed with MS 15 years ago and is now 59 years old, struggle with the disease and began to assume the worst, given the hereditary components of the disease.
The symptoms Wendi began to experience were not severe but included balance issues which made walking difficult.
When she was finally diagnosed with MS, Wendi said she felt a “sense of relief.”
“I knew now what I had, so I knew how I could deal with it.”
In 2008, Dr Paolo Zamboni, an Italian surgeon, announced that he had discovered a theoretical condition he called Chronic Cerebrospinal Venous Insufficiency (CCSVI).
People suffering from this condition have reduced blood flow from the brain to the heart because of the narrowing of veins along the spinal cord between the head and upper chest.
Zamboni said he believed CCSVI caused a build-up of iron in the brain which would eventually lead to MS symptoms.
He has developed a medical procedure, popularly known as the Liberation treatment, aimed at correcting the condition.
It is now offered in several countries.
Wendi and Cathy were aware of the treatment and began to talk to people who had undergone the procedure last year after Wendi’s diagnosis.
They began to research countries that offered the procedure and compared prices in each nation.
Bulgaria offered the most economical choice as Wendi and Cathy each paid 6,500 euros, or about $8,600 in Canadian dollars.
They also had to pay for their flights to Bulgaria and accommodations at a hostel.
Bulgaria only had a two-month wait time for the procedure, Wendi added, compared to other countries where wait times could be up to two years.
But another reason they chose Bulgaria over places such as Mexico or Costa Rica, Wendi said, was because they were certain the money they would pay for the procedure would help the people and medical facilities of that country.
“It’s not going to be taken by potentially a drug lord or some rich person who owns the hospital and just pockets the money,” she said.
Wendi and Cathy were in Bulgaria for 10 days, but the procedure only took an hour.
It involves inserting a balloon-like instrument into a vein and expanding it to stretch the vein.
Wendi described the instrument as similar to a “toilet snake” and said she could feel it moving through her body after it was inserted into a small incision at the top of her leg.
During the procedure she felt some discomfort and pain, mainly because she could not take an anti-inflammatory beforehand due to an allergy.
She said she wanted to undergo the treatment to maintain her current quality of life, her memory and her range of mobility, all of which could be negatively affected by MS.
Since having the procedure done, she said she has more energy and feels more like herself.
“I think it was effective for me. It helped make improvements. I’m sharper mentally.”
Cathy lost the ability to walk due to MS and is currently in a wheelchair.
She said that since undergoing the procedure, she had regained some of her balance, her voice is stronger and her goal is to one day walk again.
Another Osoyoos resident, 58-year-old Yolanda Liebel, underwent the treatment in Mexico in November.
She was diagnosed with MS 30 years ago.
She paid $9,750 US for the procedure and said the treatment helped lessen a numbness in part of her body, nearly eliminated a limp, cleared her head and improved a sensitivity to bright light.
Dr. Ron Unger of Oliver retired from practising medicine in 1996 after being diagnosed with MS in 1992.
He underwent the treatment in Poland in May of 2010.
Although he declined to talk about how the procedure has affected his life, he said he knows at least six people from Osoyoos and Oliver who have undergone the treatment.
Many people from B.C. and the Prairie provinces contact Unger for information about the treatment, but he said he does not provide advice on whether or not to go through with the procedure, which he compares to an angioplasty.
He endorses the procedure, even though experts have recommended against supporting a clinical trial of the treatment in Canada.
He said roughly 12,500 people around the world have undergone the treatment so far and added that in one-third of patients the procedure doesn’t help; in one-third it helps a little and in one-third it helps a great deal.
Unger questions why neurologists and the Multiple Sclerosis Society of Canada are still skeptical of the treatment even though two-thirds of those who have undergone the procedure have shown some improvements.
Janet Palm, president of the Multiple Sclerosis Society’s B.C. Division, said the procedure still needs to be researched more before the society can endorse it.
“The Society feels that although the procedure suggested by Dr. Zamboni is very exciting, it is not yet supported by adequate research evidence – and Dr. Zamboni himself has stated that further research is required,” she said in an email. “The MS Society of Canada together with the National MS Society in the United States have funded seven diagnostic research studies to help determine if there is a relationship between MS and CCSVI.
“If this relationship is proven, the MS Society will support research into appropriate treatment of CCSVI.”
Palm added, however, that since research evidence supporting the theory of CCSVI is not yet available, the society suggests that people with MS only undergo the procedure with a treatment trial.
“We understand, though, that many people do not want to, or cannot wait until a treatment trial is funded, and choose to go abroad for treatment. We respect that choice and have provided information on our website to help people with their decision-making process.”
Right now there are as many as 10,000 people in B.C. living with MS.