Barre google de traduction indispensable!
*Balloon angioplasty with or without stenting for chronic cerebrospinal venous insufficiency (CCSVI) in MS
Lena Close feels her only option is a surgery in Costa Rica next month.
Lena Close doesn’t dream big. The 34-year-old would like to have some fun with her kids, or go to a movie with her husband. Heck, some days she’d settle for just being able to get into her own laundry room.
Multiple sclerosis is making her world smaller, one nerve ending at a time.
Since January, when the Langley mother of three had a flare-up and had to spend a month in the hospital and another month in therapy, she’s been confined to a wheelchair.
It’s not how Lena and her husband Rob, 36, imagined their lives.
They had a young family and had laid down roots in Langley. Lena had grown up here and Rob had been here since childhood. She was a financial services advisor at a large insurance company.
Then came the diagnosis a decade ago.
Rob now works at a recycling depot and tries to run a computer repair business from their Langley City basement suite, needing the flexible work hours to care for Lena and the kids. Each summer, she suffers through the heat.
“It’s to the point where I have to quit my jobs every summer,” he explained.
After the birth of her second child, Lena noticed her leg was numb and it spread to her lower half.
In recent years, she stopped going on outings with the family because of the difficulty of getting around, the extreme fatigue, difficulty swallowing, and the need for frequent bathroom trips.
“I’ve said, it’s not just us in this marriage,” Lena commented. “We have MS in this marriage, there’s three of us.”
It’s a disease little understood and one that affects each patient differently.
The diagnosis came 10 years ago but it’s been within the last five years that MS has really taken its toll.
Doctors are stumped why Lena, with clean MRI tests and no family history of the disease, would be so incapacitated.
“I have completely numb hands and feet,” she said.
MS affects every part of her body, including causing severe fatigue, eye problems, breathing problems, and mental fog.
Lena dreads the warm summer weather most people enjoy because heat is a trigger.
Naturally, MS has made Lena and her loved ones experts on the disease. She’s learned what works for her – a strict diet and supplements, and no MS medications, which she said make her worse.
But the steps only help with the symptoms. She’s looking for a way to stop the disease’s progression and the internal damage the disease causes.
That’s why she is heading to Costa Rica in September for liberation therapy, a procedure considered experimental in Canada. She and Rob are spending several days there while she has a small surgical balloon threaded up through her abdomen and into her carotid artery in the neck. The balloons will be inflated to stretch the blood vessels and increase flow to the rest of the body.
It’s a procedure many Canadian patients are travelling abroad to obtain. The Close family is scrambling to raise $15,000 to cover the travel and medical costs, raising about $2,800 so far. They need to reach out because the family finances are so stretched already.
The medical establishment has labelled MS as an autoimmune disease and left its treatment to neurologists but she said the therapy that pushes open blood vessels in the neck shows there’s more to MS.
“Neurologists took over the disease and said ‘it’s a nerve thing,’” she commented.
In hindsight, she’s seeing how there is a vascular component to her MS.
Flare-ups are tied to her monthly menstrual cycle and she found out estrogen helps make blood vessels more elastic. As well, heat makes blood vessels constrict, so she spends her life surrounded by fans because getting warm causes discomfort.
Lena said a few years ago, stem cells were touted as the new cure and there have been other therapies, like bee stings, that have been hailed but she is confident in the blood vessel treatment because she’s seen it help so many fellow MS patients.
The family will be filming Lena before and after surgery and plan to post the footage online.
Lena noted that it costs about $25,000 annually for MS drugs but the government won’t pay the estimated $1,500 that this surgery would cost if done in this country.
And she’s realistic about the outcome, knowing about half of the patients have their blood vessels re-constrict but said it’s still more economical to have to redo a surgery than just go with the costly drugs.
“My hope is it stops the progression, that’s the biggest thing,” Lena said.
Lena Close and her family are trying to raise money to cover the costs of an MS treatment not available in Canada. The Closes are trying anything they can think of to bring in money for Lena’s treatment.
They have set up the website liberatelena.weebly.com which accepts donations through Paypal. There is also information on the site about a bank account for donations.
The Brookswood family has also started a bottle drive and is looking for contributions. People can drop them off at the Langley Bottle Depot on Industrial Avenue. Tell the staff they are for the Lena Close Fund.
The website also has ticket information for the upcoming pub night at the Fox and Fiddle. Tickets are $25 and the event, which will feature prizes, is Sept. 11. Up for grabs are a TV, Canucks tickets, gift baskets and more.
On Sept. 12, they are having a bowlathon at the Alder Lanes in Aldergrove."
City woman travelling to India for MS treatment
Posted By Jason Miller
Updated 1 day ago
Margaret Hanley is taking a risk she hopes will change her life for the better.
For almost 30 years the Belleville woman has been battling multiple sclerosis (MS), a debilitating neurological disease that is unpredictable and can affect any part of the body.
She has to depend on the support of a cane and/or walker to move around as she has progressively lost the use of her legs.
There is no cure for the ailment, so the 52-year-old is heading to India on Aug. 21 for the controversial Liberation Treatment that is bringing new hope to patients like her who are out of options.
"I think the best step right now is to have this Liberation Treatment," she said. "Right now I'm at a stage where I need to go forward and seek help. I have no choice but to seek other avenues."
The treatment opens blocked veins in the neck, which medical experts have theorized causes many of the crippling symptoms of MS. Hanley said the procedure is somewhat similar to angioplasty used in heart patients.
"My neurologist here in Kingston told me there is nothing more they can do for me," she said. "It inhibits me from doing normal things. It's progressively getting worse. I get up in the morning and I'm exhausted."
About 200 supporters of her cause converged at the Quinte Alliance Church for a dinner and silent action aimed at raising funds to cover some of the nearly $20,000 (hotel and travel expenses included) it will cost to make the trip to Bangalore.
The event was staged by a members of a Belleville recreational swimming group called Babes in Bathing Suits (BIBS).
"I can't believe all of this is happening," she said. "We couldn't have done this without the BIBS."
Hanley is steadfast on her decision to do the treatment despite the fact that an increasing number of MS specialists have countered the dubious success stories of the procedure by urging patients to wait until it has been properly studied and tested.
No Ontario doctor will do the liberation treatment and only a handful of doctors in Western Canada have shown any public support for the procedure.
"Unfortunately the Canadian government is not on board yet to have these procedures done here," she said. "Our medical system is too conservative."
She said that has forced Canadian patients to turn places like India and Poland for the treatment. Hanley said most of the people treated by the specialist she will be seeing have "improved significantly."
"To me it sounds very promising," she said. "There is so much hope there."
Aileen Hern, one of the key organizers, said the group came together about four weeks ago to plan the fundraiser for Hanley, who is also a member of BIBS.
"We're quite excited to be able to help out," she said. "Some of us may have some physical ailment such as arthritis but nothing like that (MS)."
People interested in donating can contact Aileen Hern at 613-399-3544
- Just four months ago, multiple scleorosis had 30-year-old Liz Simenik wracked with near constant pain and debilitating fatigue. But after an experimental treatment some dismiss as snake oil, she's planning a 10k run later this month. (Lyle Aspinall, QMI Agency)
CALGARY - From barely being able to walk without a cane, to training for a 10-km run.
If Liz Simenik is a victim of modern-day snake oil, or under the spell of a placebo, then it's a remarkable testament to the power of the human mind.
Just four months ago, the 30-year-old multiple sclerosis patient was in constant pain and permanently exhausted, sleeping 12 to 14 hours a day.
Now, Simenik is running again, her former life as an athlete reclaimed. And in two weeks, on Aug. 28, she will run 10 km, all to prove a point.
"It changed my life about 180 degrees," said Simenik.
If Simenik is convinced CCSVI restored health and vigour lost to MS, others say the controversial vein-opening treatment is dangerous quackery, giving false hope to people with a debilitating disease.
The operation called "liberation therapy" reverberated through multiple sclerosis society in 2008, when Italian doctor Paolo Zamboni announced a stunning breakthrough.
Zamboni theorized that a narrowing of veins -- chronic cerebro-spinal venous insufficiency -- resulted in a buildup of iron in the brain, triggering many of the symptoms related to MS.
The Italian surgeon said a relatively simple procedure could relieve up to 90% of MS patients -- Zamboni's own wife was allegedly cured through the liberation operation, which renews proper blood flow.
For those robbed of movement, and like Simenik, left with near-permanent pain, it sounded like the miracle they'd be praying for. As you'd expect, the news spread like wildfire.
"I saw it on a news program, and of course, I wondered if it could help me," said Simenik.
The problem is, Canada's health care system doesn't function on hope, and years of clinical trials and evidence-gathering stands between MS sufferers and the liberation treatment.
Some, like Simenik, have chosen not to wait, paying tens of thousands for treatment by foreign doctors.
In May, at a cost of $10,000, Simenik underwent the 15-minute surgery in Frankfurt, Germany, where a doctor cleared a blood-flow blockage near her jaw.
"Two days later, my husband pointed out I was walking faster than him," said Simenik.
The improvement was rapid, and dramatic: No more cane, no more fatigue.
"I still have MS, but my symptoms are not affecting me the way they were before -- I enjoy the day again."
The Calgarian's words are more fuel on the fire of controversy.
Some of Canada's top doctors have argued the so-called cure may trigger a placebo effect, where the mind tricks a patient into believing a treatment has worked, even if it really does nothing.
With MS symptoms coming-and-going in some patients, they say the so-called cure may be just good timing.
It may explain why there are reports of the liberation treatment offering only short-lived relief, and other cases where it apparently hasn't worked at all.
But then there are people like Simenik, who can now run 10 km, weeks after struggling to walk.
Last month, Saskatchewan Premier Brad Wall said his government is willing to fund clinical trials, the first jurisdiction in Canada to do so.
If Saskatchewan proves the procedure helps, other Canadians will then be able to apply for the surgery.
But to wait years, when each day robs you of more freedom and joie de vivre?
"It hurt just to move -- it was like having the flu all the time," said Simenik.
"Your quality of life is very diminished, because you can't make it through a day without pain, and extreme fatigue."
Simenik's happiness means more frustration for the thousands of Albertans who have MS but no money to try the liberation treatment.
Instead of tests, Alberta Health Services has offered only cautionary words to MS patients, saying they should be wary of media reports and treatment outside of Canada.
Having watched the backlash build, Simenik says she has decided to use her rebirth to offer hope.
She'll run the 10 km, raising money for CCSVI Calgary, so others might have the surgery, too.
Simenik says she knows liberation treatment may not help everybody, but Alberta's current policy of helping no one is frustrating.
"I want to raise awareness about the procedure and how it improved my quality of life," she said.
My Rebuttal to Paula Simon's Rediculously Ignorant Article on Provincial Funding for CCSVI Studies and Treatment
A controversial treatment for multiple sclerosis provides hope, but to fund it at the expense of legitimate research is irresponsible