LATHAM, N.Y.—Tonie Turner stops talking and stares at her hands.

She is holding them out in front of her, palms open and towards her face, as she lifts her neck up from the pillow atop her hospital bed to get a closer look.

“Hey, Mike!” she calls out as she glances at her husband just long enough to catch his eye and then returns to her hands. “Look at that! Look at that — blood!”

They look like regular palms, with a pinkish tinge and riddled with a complex pattern of creases and lines that could either unlock the key to her personality and future or be a collection of idiosyncratic folds of tissue just below the surface of the skin, depending on who is doing the looking.

Turner sees something in between.

“They're red,” she says as she rubs her left thumb all over her right palm, pressing into the flesh.

She looks at her husband again and sighs.

“It's a sign, Mike,” she whispers.

“Yeah,” he says wryly. “Of better blood flow!”

Several weeks earlier, Turner, 51, had been sitting on the sofa in the den of her Mississauga home as she described her life and how she hoped it would change.

That change, if everything went according to plan, would follow her journey to undergo experimental surgery for the multiple sclerosis she has suffered from for more than a decade.

Turner is not your stereotypical MS patient, or at least she does not feel like one, and unless she told you about her symptoms it would be difficult to see that she has any. There is numbness in her hands. She drinks tons of coffee to combat fatigue. She wears sunglasses at work and keeps the lamps low at home because her eyes ache under bright lights. She finds her left leg is weaker than her right.

“Told you,” she laughs as she trips and falls on her way up the stairs. “Left leg went out!”

This is not the kind of life that Turner expected when she first received her diagnosis following an ordeal that began with an accident involving a company vehicle in the fall of 1999.

That led to pins and needles that ran from the bottom of her feet to her chest, then a dragging left leg, and then blurred vision resulting from inflammation of her optic nerve. She had to miss months of work.

It took a while, but eventually she got the label that sent her spiralling into denial, depression and even thoughts of suicide: Relapsing-remitting multiple sclerosis (RR-MS), which behaves just the way it sounds, with symptoms waxing and waning over the years.

“When you're told you have MS,” Turner says, “the first picture that comes into your head is a wheelchair.”

That is not what happened.

She refuses to take any medications, despite the scolding she gets from doctors. She prefers acupuncture, traditional Chinese medicine, chiropractic, exercise and a strict diet — whatever she can do to stay healthy without using pharmaceuticals.

Sometimes, her healthy appearance makes it hard for the people in her life to understand what she is going through.

“I remember when my mom passed away, my own family got on my case because I did not help out and I tried to explain to them: ‘I can hardly feel my hands,' ” she says. “I was numb.”

Co-workers at the telecommunications giant she works at had a nickname for the physician who wrote her sick notes during her most severe attacks: “Dr. Summer Off.' They thought it was all in her head. Sometimes, even Turner wondered if it was all in her head.

Still, deep down, she knew she was sick. Yes, sometimes stress aggravates her symptoms and so she tries to cope the way anyone should.

But, numbness in her hands? That is not normal. And she so badly wants to be normal.

“I can't wait to get my hands back,” she says over and over again.

She is already a damn good poker player. But she wants to be able to shuffle the deck like a real dealer, riffle it into a dovetail. She cannot always feel the cards when she plays.

“I can't wait to walk on the beach,” Turner says to her husband, Mike Turner, 52, early Monday morning. She's perched on a green upholstered chair in the waiting room of ImageCare, a medical imaging centre at the Capital Region Health Park in Latham, a suburb of Albany, N.Y.

That will happen when the couple takes their vacation in Cuba next month, but right now she is more anxious about what will happen in the next hour.

“What time is it?” Turner says.

She was up all night at the nearby motel, and not just because it is on the same block as the local fire department.

She has been waiting more than a year for this day.

“It doesn't feel real,” she says.

“It will once you are getting the procedure,” says her husband.

That would be the so-called “Liberation” treatment pioneered by Italian vascular surgeon Dr. Paolo Zamboni and popularized by a Canadian television report that trumpeted it as a major breakthrough despite being met with much skepticism from the medical community.

Like many of the nearly 75,000 MS patients in Canada, Turner was excited by what she saw on the news.

The treatment is based on a completely new theory of the disease. Whereas neurologists work on the assumption that MS is caused by inflammation and a malfunctioning immune system, Zamboni points to narrowed veins in the chest and neck.

He called this condition chronic cerebrospinal venous insufficiency (CCSVI), and suggested that this decreased blood flow causes iron to build up in the brain and provoke the symptoms.

So, widening the veins through a relatively low-risk procedure called balloon venoplasty, which is similar to the balloon angioplasty used to widen arteries for heart patients, would lead to better blood flow and relief of symptoms. Not a cure, per se, but something new that Turner felt she could get excited about.

Others got excited, too. Thousands of MS patients across the country took to online social networking sites to share stories about their symptoms and trade tips on where to access the procedure.

The procedure was not and still is not available in Canada, and the federal health minister decided in September to hold off on funding pan-Canadian therapeutic clinical trials of the procedure until it is scientifically and ethically advisable to do so.

So, Turner put her name on a waiting list for the Albany-area clinic in June, where two-thirds of the roughly 400 patients who have undergone the surgery this year have been Canadian.

Mike Turner handed over his credit card to the receptionist before the procedure had even begun.

The bill was $6,400 (U.S.).

Tonie Turner is getting into her hospital gown and being prepared for surgery by a cheerful nurse.

“I want you guys to find something,” Turner says behind the curtain in the hallway just steps away from the operating room.

“Of course!” says the nurse, Ann Prawdzik. “This is the place where you want us to find something.”

Turner is nervous because she cannot have the procedure unless the doctor finds a narrowing in her veins.

Turner stares straight at Dr. Ken Mandato, the interventional radiologist who will perform the surgery, when he arrives and asks how she is feeling.

“I'm nervous as hell and I want you to find something,” she says from the bed. “Please find something.”

She is still worried he will find nothing. She is still worried it is all in her head.

The procedure has three main components.

The first is an ultrasound to get an idea of how the veins look and work when the patient is put into different positions, such as sitting up and lying flat on her back. They are looking for subtle changes in diameter, direction of blood flow and what the valves look like in the jugular veins on both sides of the neck.

Turner had that done at a vascular imaging clinic in Barrie, where Dr. Sandy MacDonald is a proponent of the Liberation treatment but cannot perform it himself.

The second part is called a venogram, which is an X-ray test that takes snapshots of the blood flow, which is easier to see after a special dye is put into the veins.

Mandato will insert a catheter “about the size of a strand of spaghetti” into the femoral vein found in the right side of the groin and then advance it up to the jugular veins on both the right and left side of the neck and the azygos vein in the chest, taking pictures along the way and comparing them to what was seen in the ultrasound.

Are the veins narrowed, or what the doctor would call “stenosed”? Is there reflux, meaning a backflow of blood once it passes the valve inside the vein? Is the blood being held up somehow on its way to the heart?

The right combination of answers to those questions means the doctor moves on to step three: the balloon.

It really is a balloon, Mandato says, agreeing when suggested it is like a tiny version of what a clown would twist into a wiener dog.

The balloon is carefully inflated inside the narrowed vein and then the doctor gauges the pressure, and watches the patient carefully to see if she can feel the stretching. When the doctor decides enough is enough — usually after about a minute — the balloon is removed and then more pictures are taken to compare the before and after shots.

That is usually where things come to an end, but Mandato says on rare occasions, he decides it is worthwhile to put in a stent.

A stent, which is a wire mesh tube matching the diameter of the vein, is a “great technology,” Mandato says, but usually is better reserved for arteries, which have thicker walls and faster blood flow than veins, where stents can increase the risk of blood clots, or even dislodge them.

The dissolving of a blood clot caused by a stent reportedly played a role in the recent death of an Ontario man who travelled to Costa Rica for the treatment.

Still, if after the venoplasty the vein appears as if it is on the verge of collapse or something else that is limiting the blood flow, a stent might be inserted to help keep it open.

Mandato says he might also insert a stent if the stenosis is stubborn, the patient is in the advanced stages of MS and it looks like the potential benefit would outweigh the risk.

The wooden door of the operating room opens about 40 minutes after the procedure began and Turner is wheeled into the hallway on her hospital bed.

Her husband nearly jumps out of his chair to greet her.

“How do you feel, Tonie?” he asks.

“Mike, I feel good,” she says slowly, softly, in a daze. “I'm glad you're here.”

“Things are slightly better,” she says after a few minutes, opening and closing her hands.

“Just slightly?” asks Mike.

“Yes, Mike,” she says, but she is smiling widely.

They found something. Three times: left and right jugular and the azygos, too. Three balloons. No stents.

She says she started to cry in the operating room when the venogram showed a narrowing in her azygos vein and the doctor decided to insert a balloon.

“I was right! I was right!” she says she thought to herself.

She looks at her husband.

“I'm just so happy. Mike, I'm so happy. All the worrying. All this stuff I've been going through, man. Eleven years of this s---,” she says as tears begin to stream down her cheeks again.

“Mike, kiss me,” she says, and he leans over the guardrail.

“My hands, Mike,” she says suddenly. “As I'm talking to you, they're slowly getting better.”

The next morning, Turner returns to the hospital for a follow-up ultrasound.

Over breakfast in the hospital café, she alternates between the same ecstatic excitement she felt immediately after the procedure and wondering why she has seen little improvement since the day before.

“I expected the whole numbness to disappear the first day . . . but having circulation in my hands, that is a positive right there and I know something is happening,” she says, also noting that colours appear more vibrant post-operatively. “It's getting better and I guess for me it's going to be a slow process compared to others.”

Mandato says about a third of patients have self-reported dramatic results, another third have seen modest changes in some symptoms and the rest no appreciable change.

After going over her ultrasound results — everything looks good, he says — Mandato cautions Turner against trying to chart her progress too closely, lest she become disappointed with the slow pace of results.

“It's like a kid trying to measure how tall they're getting every single day,” says Mandato, who also strongly discourages his patients from getting the procedure done again if their symptoms reappear, unless they can honestly say their initial results were dramatic. “You're not going to see the pencil mark change every single day.”

On Friday, back at home, Turner says her symptoms are still waxing and waning.

“It's really weird. They're fluctuating,” she says.

That morning she woke up and the numbness had returned to her hands. Her leg ached, too, but then after she emerged from the shower she felt as she did shortly after the surgery.

“It's happening,” she says.

Toronto Star

http://www.thespec.com/living/healthfitness/article/303221--hoping-for-a-multiple-sclerosis-miracle