Tuesday, March 10, 2009

For woman with reflex sympathetic dystrophy, it's starting over, pain-free

For woman with reflex sympathetic dystrophy, it's starting over, pain-free

A Christiansburg woman chose an experimental coma treatment, offered outside the United States, to treat chronic pain caused by RSD syndrome.

By Anna L. Mallory

CHRISTIANSBURG -- Call it a rebirth.

At age 23, Christiansburg resident Brandy Sachs is a new woman, learning to walk, sleep, eat and live life again, this time pain-free.

She's three months removed from an experimental coma treatment that doctors hope will permanently relieve the symptoms of reflex sympathetic dystrophy syndrome, which has ruled her life since childhood.

RSD is a neurological condition that can cause intense pain. Doctors don't know what causes it.

"They compare the pain with advanced-stage cancer. It's one of the more excruciating types of pain that one might have, and it's associated with several different symptoms. Add them together and it makes it intolerable even to the lightest touch," said Dr. Tim Lubenow of the Rush University Medical Center in Chicago and vice president of the International Research Foundation for RSD/CRPS. CRPS stands for complex regional pain syndrome.

Sachs was diagnosed at age 13. Since then, she's lived through pain pills, drug injections and surgeries.

At a young age, she forced herself to stop crying.

"You're just so overwhelmed with pain, if you were to do that, you'd cry constantly," Sachs said. "When you have RSD, you have different coping mechanisms."

Her main strategy: Ignore it, as much as she could.

The agony ceased Oct. 13, when she woke from the coma, but it was the beginning of another journey to become RSD pain-free and stronger.

Now, Sachs attends physical therapy twice a week to help strengthen her weakened body. Her nervous system is still in shock from the coma, which left her unable to perform everyday functions, such as shivering.

"It's watching her be a newborn and start all over again," said her mother, Lisa Sachs.

If Brandy Sachs is pain-free for a year, doctors will consider her in remission. Cures for RSD, now also called CRPS, are rare, particularly for patients who have suffered as long as Sachs.

The costly and controversial coma, designed to reboot a patient's nervous system, was a last resort for Sachs. The procedure is only offered in Saarbrucken, Germany, and Monterrey, Mexico, and is not approved by the U.S. Food and Drug Administration or insurance companies.

"The pain has been her life," Lisa Sachs said. "The pain has been our lives."

The beginning

Brandy Sachs grew up in Fairfield, Pa., with her brother, Adam, and parents, Gordy and Lisa. She was a healthy and adventurous child, climbing trees and running around.

Shortly before her seventh birthday in 1992, she started having chest pains and weeklong headaches. Numerous doctors called the pain a medical mystery.

By middle school, the pain had subsided. And by her freshman year of high school, she seemed a normal teenager again. Sachs joined the school's choir, started running cross country and volunteered alongside her parents with her local fire and rescue squad.

The pain returned in 1999 after her brother squeezed her fingers together. The next day, her right forearm and hand were throbbing, swollen and blue.

Again, her doctors were baffled. But another physician passing in the hallway overheard and suggested that she might have RSD.

Sachs didn't want to hear the details. She admits being stubborn and argumentative, but hearing the minutia of the condition just made her feel worse.

"I wouldn't listen to what they had to say," she said. "I live with it. Why would I want to learn about it?"

But with a diagnosis and after half a year of medication and physical therapy, the pain had diminished.

"Finally, I was able to do everything that any other kid my age could do," she said.

But two years later, she smacked her ankle on a bar below the school bus seat. Like the arm two years before, it swelled -- eventually to the size of a two-liter bottle -- and turned blue and ice cold.

This downward spiral was worse. Eventually, powerful painkillers such as morphine didn't help. During a five-day hospital stay for treatment, her right foot turned inward.

By this time a junior, Sachs was on homebound instruction, balancing excruciating pain and class work. She managed to make A's and B's.

She was determined to finish high school, even though new injuries caused her RSD to spread to other parts of her body. On graduation day, the pain was too intense for Sachs to walk across the stage. She used a wheelchair.

"You really have to set goals or you really are going to curl up in a ball, you know?" she said.

Miracle drug

The summer after graduation, appendicitis sent Sachs back to the hospital. During the operation, doctors used ketamine as an anesthetic, and her foot and knee temporarily straightened.

Since the 1960s, ketamine had been used in small doses, alone and combined with other medicines, as an anaesthetic in both humans and in animals. Ketamine blocks receptors in the brain and spinal cord that respond to pain, Lubenow said. In larger doses, it can cause hallucinations in humans.

The Sachses began looking at ketamine treatment options and found research by Dr. Robert Schwartzman of Drexel University College of Medicine in Philadelphia, considered a pioneer in the use of ketamine to help RSD patients.

It would be four years before Sachs met Schwartzman. Still using a wheelchair, she graduated from college. She started graduate school, but the strain of RSD and continuing studies in social work proved too much for her to handle, and she moved in with her parents, who by then lived in Christiansburg. There, Sachs fell on the right foot.

She began seeing Schwartzman and undergoing low-dose ketamine infusions, which temporarily straightened out her knee and foot.

But temporary fixes weren't enough. Schwartzman placed Sachs on a waiting list for a ketamine-induced coma treatment, the most extreme option.

The procedure can pump up to 50 times the normal dose into patients, and basically reboots their nervous systems in hopes their pain signals will reset. Because of the amount of ketamine used, patients often experience hallucinations during the five-day procedure.

Sachs was the 55th person to fly to Germany for it.

Lisa Sachs said her daughter's decision to become a "test monkey," was risky, both financially and medically. Because it's not approved, insurance companies won't foot the medical bills. The Sachses were forced to sell their home to pay some of the bills and move to a smaller one in Christiansburg, where Lisa Sachs grew up. They set up a donation drive to pay the other bills.

The treatment and trip cost about $50,000.

There is no guarantee of cure, and research shows that the pain can return in 55 percent to 60 percent of cases.

The coma

In September, Schwartzman's office phoned and said Brandy Sachs would need to be in Germany within two weeks. On Oct. 7, she went under.

Lisa and Gordy Sachs spent the five days visiting their daughter -- who was sometimes asleep and sometimes thrashing in her bed -- and distracting themselves by sightseeing.

Brandy Sachs had nightmares that she still doesn't like to talk about.

On Oct. 13, she began to wake up, taking occasional breaths. She weighed 76 pounds.

Sachs remained on feeding and breathing tubes for two more days. She developed a touch of pneumonia and could not talk. By Oct. 16, she was whispering, but still having hallucinations.

"I kept snapping in the air and thumping the bed," Sachs recalled. "I knew there was something I wanted to say, but I didn't know how to say it."

She spent the next few weeks regaining strength and trying to walk again. Doctors fitted her with an orthopedic shoe for her right foot, and for the first time in about seven years, Sachs took 15 steps.

Two weeks later, she returned home to Christiansburg. She weighed 89 pounds and still had trouble walking.

Gaining strength

This is Sachs' chance to finally create a life for herself without dealing with the pain.

"I'm still kind of frozen in time," she said. "I still feel 16."

Sachs wants to have fun and find ways to enjoy life that she couldn't as a teenager. She also wants to re-enroll in graduate school and continue her studies in social work.

First, she must become stronger.

Sachs is expected to return to Philadelphia for booster ketamine shots every two and a half months.

Because her internal clock was reset, she takes sleeping pills. She's been through five types, but still doesn't typically fall asleep until 5 a.m.

She uses a walker, and even the smallest journey to the kitchen and back is tiresome.

When she gets out, she likes to shop at her favorite bookstore for fantasy novels or spend time with family. Her mother is her sidekick, helping Sachs push through post-coma aches and pains that seem insignificant compared with the earlier battles.

Her rehabilitation is frustrating and painful. Sachs rarely does exercises at home because they hurt. After years of building up a tolerance to it, Sachs' threshold for pain is now low.

She has used her lower body so rarely that fewer than 10 leg lifts can tire her. The therapist pleads that she be positive during their sessions, which should last the rest of the year.

"I'm not a sunshine-and-daisies person, I'm gloomy," Sachs replies.

The therapist asserts that it's because she's been so used to pain throughout her life.

Sachs again ignores it. She said she does see herself progressing, both in strength and in outlook. Though she's still quick to debate or roll her eyes as she does exercises, she admits she laughs more now that she doesn't focus on blocking the pain.

"You either give up, or you move forward."

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