With others' help, mom takes risk to alleviate pain

A fundraiser will help a single mom pay for an experimental treatment.

By CAMILLE C. SPENCER, Times Staff Writer
Published December 22, 2007

It began a year ago with a numbness in her left arm.

Soon that was replaced by a constant, jabbing pain on her left side. The mysterious ailment eventually robbed Mary Sutton of the simple things in life: hugging her 7-year-old daughter. Blow drying her hair. Driving a car.

After rounds of medications failed to ease her pain, a doctor figured out what was plaguing Sutton: reflex sympathetic dystrophy, or RSD, a neurological condition caused by a malfunctioning nervous system.

Now, the 33-year-old is leaning on the only hope she has to ease her pain: a $32,000 experimental treatment she will undergo next month in Mexico.

On Friday, a fundraising walk was held at Longleaf Elementary, her daughter Elizabeth's school, to help pay for Sutton's treatment.

"It's my last hope," Sutton said. "I have my daughter to think about."

'Pain is indescribable'

Sutton's health problems began when she woke up one day in December 2006 and couldn't move her arm.

"It was hard to move it, and I couldn't move the fingers," she said. "I was nervous because I'd been healthy beforehand."

Soon after, a stabbing pain overcame the left side of her body. Everything hurt, from raindrops to the breeze stirred by a dog walking past her.

Sutton, a single mother, needed help from her parents to care for her daughter.

"The pain is indescribable," Sutton said. "Walking on my foot felt like I was stepping on nails."

Sutton of New Port Richey ended up seeing a string of neurologists. One said she had a pinched nerve and tried to treat her pain using a traction machine. The pain persisted.

Another put her on a variety of pain medications, from oxycodone to Vicodin. Nothing worked.

Things got worse in the summer, when the vision in Sutton's left eye starting getting fuzzy.

Her eye doctor said she might have RSD and referred her to a Tampa doctor, RSD specialist Anthony Kirkpatrick, whom Sutton saw in August.

Kirkpatrick supported the eye doctor's diagnosis of RSD, a disease that affects between 200,000 and 1.2-million Americans, according to the Reflex Sympathetic Dystrophy Syndrome Association's Web site.

The neurological disease is usually brought on by trauma such as a broken bone, which can cause the nervous system to send signals to the brain that cause chronic pain.

In some cases, such as Sutton's, the origin of her RSD is hard to pinpoint, since she hadn't experienced any bodily injuries.

And the diagnosis didn't do much to relieve Sutton.

"I was overwhelmed," Sutton said. "I knew I would be in for a long haul."

Kirkpatrick ordered a series of nerve blocks, injections of medicine into the back to relieve pain. That didn't help Sutton either.

Then, a ray of hope: Kirkpatrick mentioned an experimental treatment that could ease Sutton's pain.

The catch? It would require Sutton to go to Monterey, Mexico, and be put into a medically induced coma for five days.

Treatment has risks

At first, Sutton was apprehensive. But by the fall, her disease had caused purple, quarter-sized ulcers to develop on her left arm and leg and caused her left arm to shake uncontrollably.

By October, she was unable to walk and started using a wheelchair to get around. She was forced to stop working as an assistant manager at a Gymboree store in Clearwater.

Sutton figured the treatment was her best bet. Patients are given a heavy dose of an anesthetic called Ketamine to put them into a medically induced coma, which shuts the body down. They are awakened five days later, with hopes that when the body begins working again, the pain will stop. Kirkpatrick referred to it as "rebooting" the brain.

"I knew that would be my last hope," Sutton said. "And I have Elizabeth to worry about."

About 40 people have successfully completed the treatment at hospitals in Mexico and Germany, Kirkpatrick said, and have resumed normal lives almost pain free. But the treatment also has risks.

"These are patients who have agreed to put themselves in a situation where they may not wake up," he said.

Sutton's parents will accompany her to Mexico on Jan. 2, and she will return Jan. 24. An aunt will take care of her daughter while she's gone.

"It's just been terrible, watching her whole body disintegrate," said Sutton's mother, Ethel Dzikonski. "Here she is in this wheelchair. ... She'll come back better, but there is going to be a long haul."

Sutton's family has agreed to foot the bill for the treatment, which will cost $32,000. She plans to pay them back, in part with money raised from Friday's walk, organized by school officials who noticed Sutton's medical problems a few months ago.

"All of a sudden, at the beginning of the school year, I noticed she was having a tremor in her arm from my office window," said Arlene Bodden, principal at Longleaf Elementary School. "I thought that was odd. I was told she came down with a disease and was having issues in her nervous system."

Soon after, Sutton's daughter wrote a letter to school officials asking them to help her mom. So Bodden held a meeting with Sutton to brainstorm ideas to raise money for her medical treatment, and they decided on a fundraising walk.

As she nears treatment, Sutton is grateful for the chance to regain the life she's lost.

"I'd love to take a bath, to do things with my daughter again," she said. "I want to be able to live again."

Camille C. Spencer can be reached at cspencer@sptimes.com or 727 869-6229.

Fast facts

How to help

Donations for Mary Sutton's treatment can be sent to Mary J. Sutton, P.O. Box 1765, Elfers, FL 34680

[Last modified December 21, 2007, 20:55:18]