By George Brown
Canadian politicians and doctors taking a wait and see attitude concerning the controversial liberation treatment of multiple sclerosis will now face a re-energized Michelle Walsh.
On July 27 Walsh celebrated her 37th birthday — the first in 20 years at which she has felt reduced symptoms of her crippling MS.
The liberation treatment advocate accepted an appointment July 15 at the Tokuda Hospital in Sofia, Bulgaria to undergo Dr. Paulo Zamboni’s treatment that is based on the theory that a blockage in veins in the neck drains blood from the brain may cause MS symptoms. The condition is known as chronic cerebrospinal venous insufficiency or CCSVI. Doctors claim to improve blood flow to the brain with a process similar to angioplasty.
The MS Society describes multiple sclerosis as an unpredictable, often disabling disease of the central nervous system. The disease attacks the myelin, a protective covering wrapped around the nerves of the central nervous system. In MS, there is a dysfunction of the immune system resulting in the body’s defense mechanisms (designed to protect against foreign intruders such as virus and bacteria) turning their attack on the body’s own tissue, namely the myelin.
Walsh first felt there was something wrong when she was a teen growing up in Leduc. As a young woman, she was passed around by doctors and hospitals until a neurosurgeon took one look at her and confirmed she had the early stages of MS.
Symptoms include problems with dizziness, difficulty walking, fatigue, muscle spasms, diarrhea and incontinence, tingling and numbness in the feet and hands, and trouble swallowing.
“I had immediate results, right on the operating table, which blew me right away,” Walsh said.
The former Ponoka Stampede Queen wasn’t expecting an immediate improvement in her condition. She would have been satisfied to see her progression slow down.
Doctors discovered one vein suffered from a 95-per-cent blockage and that was the cause of paralysis on her right side.
“When they opened that one up I immediately felt sensation come back,” Walsh described. “I could feel the blood flowing from the top of my head to the tips of my toes.”
Her jugular vein was 50-per-cent blocked; when it was fully opened, Walsh realized she had improved vision. She said it’s now like watching high definition TV with clearer, sharper images.
The increased blood flow has also brought warmth back to her hands and feet.
“It’s pretty much a miracle,” she said. “A miracle happened in Bulgaria on July 15.”
“My husband could see the colour in my face when we came out of the operating room. He could see the life in my eyes.
“He said, ‘Welcome back. I’ve missed you.’”
Walsh said there were five other Saskatchewan residents on her hospital floor and that 90 per cent of the patients in the unit were from Canada.
Her treatment took just 90 minutes and required no stents to be placed in her veins. Some of the patients required longer treatments, depending on the amount of blockage in their veins. Walsh said some of the patients experienced immediate improvement in their condition; some will take a little longer; and some expect to have their symptoms subside.
Walsh had been on a list to have the treatment done at a clinic in Albany, N.Y. in late August but when there was an opening at the Tokuda Hospital she gambled on six weeks of better health.
“In the grand scheme of things, there was nothing to lose,” she said. “And everything to gain.”
Today, Walsh is feeling less fatigue and she’s getting a better night’s sleep, her short-term memory has improved and her appetite has returned. Down to “90 pounds soaking wet,” she found herself pigging out in the hospital.
She realizes she may have permanent damage on her right side. “That’s okay, I’m fine with that.”
She doesn’t need the expensive medicines she had been taking for years but knows she has a regimen of neuro- and physiotherapies ahead of her.
Walsh, who lives with her husband, Chris, and two children in Beechy, Sask., southwest of Saskatoon, hopes to ride horses again, a pastime she had to give up because she had no feeling in her legs. Riding will help to improve muscle tone and help her to regain her balance.
Saskatchewan government steps up
Saskatchewan Premier Brad Wall has decided his government will go it alone with clinical trials of the liberation procedure and that makes Walsh “ecstatic,” even if the medical community is still skeptical.
“Finally a politician has listened to us,” she said. “We’ve been lobbying our government not only in Saskatchewan but also federally, since the report came out on Dr. Zamboni’s findings on Nov. 21.
Walsh is joining a rally Aug. 5 at the Saskatchewan Legislature Building in Regina to support wall’s decision and to try to convince Canada’s health ministers and the medical community “to get their heads out of their butts.”
Political support for the liberation treatment would end up saving the provincial government in health care spending, Walsh said. The treatment typically costs between $7,000 and $10,000 while annual medication costs about $15,000.
“We have a long way to go to make this happen in Canada,” she said. “People are literally dying while we’re waiting for the clinical trials to happen.”
But being strong advocate for the liberation treatment is secondary to Walsh’s primary goal is to reunite physically with her family.
“I want to be a wife and mother to my family that they’ve missed out on for so long.”
If you want to contact doctors in Bulgaria, email the team leader at email@example.com
Follow Michelle Walsh’s blog page at www.msvillagecanada.ca
You can talk to her at firstname.lastname@example.org