Out of the fog
PATIENTS LOSING PATIENCE: When she couldn't get a controversial surgical procedure to relieve symptoms of multiple sclerosis done in Ontario, Londoner Susan Skeffington turned to Arizona. So far, so good.
By RANDY RICHMOND, The London Free Press
Music star Josh Groban owes Londoner Susan Skeffington about $7,000.
Of course, she might just owe him a new chance at life.
If Skeffington stays true to form, somehow the two will meet someday.
The 45-year-old civilian worker for the London police force is nothing if not persistent, a message those who run Ontario's health-care system should take to heart.
Skeffington's persistence has taken her from Ontario to Phoenix, Ariz., and put her in the forefront of the battle to get patients with multiple sclerosis (MS) a new and controversial treatment.
She represents a growing kind of medical tourist, those who can't get what they want in Canada, especially MS sufferers.
Her travels began four years ago.
"I was exhausted all the time. That's not like me. I am very much a morning person with energy."
Blood tests showed nothing so she went about life as usual. A month later, she started to feel pins and needles, first in one leg, then in both.
She didn't think much about it until she went to the Josh Groban concert at London's John Labatt Centre on Feb. 26, 2007. One of her companions was married to a neurologist and one was a neurology nurse.
When Skeffington mentioned the pins and needles, they told her to head straight to an urgent care centre the next day.
Skeffington did, and by the end of the day was in hospital, where tests showed the lesions on her brain that are a sign of MS.
"I was devastated," she says. "I remember a lady who used to come to our house when I was young. She was quite crippled and her speech slurred and that's what people thought she had. I immediately went there in my mind."
It turns out Skeffington had the kind of MS that doesn't show itself, yet, in wheelchairs and walkers.
Her symptoms work under the surface, insistent and incessant. Constant exhaustion. Pins and needles in her arms and hands that never leave. Her eyes unable to move quickly from side to side.
"I never wake up refreshed, ever. My eyelids felt like they had 20-pound weights on them. Feeling things, my hands are numb all the time."
To read a newspaper, she had to read one word at a time, not scan whole sentences. By the time she reached the end of a paragraph she had taken so long she had forgotten the beginning.
"You are just in a brain fog all the time."
All the doctors could do was suggest different concoctions of drug therapy. Skeffington says she tried one, and ended up in worse shape than before.
Her symptoms forced her to take a year off work, and she had to fight her health insurer to get the time off and to return to work on her own terms. That was just the first of many battles.
When the story broke in the fall of 2009 about Italian researcher Dr. Paolo Zamboni, Skeffington found immediate hope.
Zamboni believes MS is a vascular, not auto-immune condition. A narrowing of veins -- chronic cerebrospinal venous insufficiency (CCSVI) -- is prevalent in MS patients and can be treated by a simple surgical procedure -- angioplasty -- that widens the veins. The procedure is also known as liberation therapy.
"I thought, 'that is it. It can be that simple,' " Skeffington says.
She started making calls: one to Deb Matthews, Ontario's health minister and London-North-Centre MPP, to see what the province was going to do about the new procedure.
Skeffington says she never got a call back.
She tried to talk to her neurologist about liberation therapy. He dismissed Zamboni's work.
"Understandably, the rest of the medical world are skeptics. They've seen snake oil salesmen over the years," she says.
"And they are protective of their own jurisdictions."
A year ago February, she went to a presentation by Zamboni in Hamilton and spoke to him about her condition.
"I like to become very informed before I make a jump to anything," she says.
Last year dealt Skeffington a series of blows that made her more willing to jump -- fighting her insurer over her return to work and separating from her husband.
"I really started thinking, 'I have to do this.' My quality of life sucked. It was so disheartening, to have nothing in the tank to do anything."
She faced barriers along the way. Her doctor balked at bending OHIP rules by referring her for a second Doppler screening, needed to get the liberation procedure.
So she talked a walk-in clinic into giving her the referral.
Then she had to talk the laboratory doing the tests to squeeze her in early so she could make a Jan. 2 appointment for the procedure at the Arizona Heart Institute.
"I am going to start the new year on a fresh start, emotionally physically, personally," she thought at the time.
Skeffington spent months fundraising from family, friends and co-workers to pay for the roughly $7,000 cost.
"It was very difficult. I have been on the other end raising money for things," says Skeffington, a volunteer for the Special Olympics. "I was just overwhelmed with the support."
She got the proper tests and the money, then two weeks before leaving, that procedure was shut down by a hospital corporation that had just bought the heart institute.
It turns out the new owners, Vanguard Health Systems, wanted to put in extra standards and medical protocols so the results of the procedure could stand up to peer review and perhaps be used to convince skeptics.
"After the initial disappointment I was satisfied they are doing this for the right reasons," Skeffington says.
But Vanguard was taking too long to re-start the procedure. Skeffington called up the corporation's vice-president and told him her story.
When his boss called back to announce the clinic would reopen soon, Skeffington then had another problem. A friend accompanying her on the trip could not make the new date, so Skeffington had to persuade Air Canada to transfer the ticket to a new person.
"It is so draining, but you have to be your advocate. You have to ask and push," Skeffington says.
She flew down Feb. 27 of this year, had all her tests done by early afternoon and was cleared for the procedure the next day.
Back at the hotel that night, she checked her e-mails and found one from the John Labatt Centre announcing the return of Josh Groban on July 19.
"This is a good omen," Skeffington recalls thinking at the time. "I am definitely going to that concert. He sent me into this spin four years ago."
The next day, sitting in a Phoenix hotel lobby anxiously awaiting a shuttle to the clinic, Skeffington and her friend heard the now ubiquitous Josh Groban on the sound system.
Another good omen.
"He has no idea the effect he had on me," Skeffington says.
Skeffington describes the liberation procedure as "like putting a coffee stir stick up your vein."
Balloons were inserted into three of the veins, bringing blood back to her heart to expand the walls. The balloons were collapsed and removed. The blood flow keeps the walls expanded.
Skeffington said she immediately noticed the effects of the procedure.
"When I was sitting in recovery I was looking around the room and I thought, I am really moving my eyes easily."
Back home at the beginning of March, she has noticed more improvements. Her hands still have some pins and needles, but are more nimble. She has more energy, though she is not pushing herself.
"The brain fog is gone," she says.
She hopes the blood flow will eventually clear the lesions on her brain.
Skeffington also hopes to head back to Phoenix in six months for more tests to support the clinic's research. That means she needs to raise another several thousand dollars.
"It's hard for me to ask, but I want to help give that information to help the bigger population. The medical community will pick it apart if the research is not done right."
Skeffington says that when her energy fully returns she hopes to help push the Ontario government to step up and join other provinces -- such as Newfoundland and Labrador, Saskatchewan, Yukon and Alberta -- that are either funding clinical trials or tracking patients who have had the procedure.
The Canadian Institutes of Health Research and the federal government do not support clinical trials until more research is done on the relationship between MS and CSSVI.
"They don't know if MS causes CCSVI or if CCSVI causes MS. No offence, but as an MS patient, who cares?" Skeffington says.
"If my veins aren't working right, fix them."
E-mail randy.richmond@sunmedia.ca, or follow RandyRatlfpress on Twitter.
MULTIPLE SCLEROSIS
Cause is unknown.
Canada has one of the highest rates in the world.
Three new cases of MS are reported in Canada every day.
MS can affect vision, hearing, balance, mobility, memory and hearing.
Women are more likely than men to develop MS.
HOW TO HELP
Susan Skeffington hopes to return to the Arizona Heart Institute for tests that would help research into liberation therapy for multiple sclerosis (MS). Donations can be made to any CIBC branch, account #4582/78-53491.