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From: byrd45 (Original Message) Sent: 5/3/2006 3:56 PM
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‘I don’t feel like having skin today’

By JO CIAVAGLIA
Bucks County Courier Times

Carol-Ann Darnley hates all things soft, fluffy, silky, satiny, downy. She can only wear sweat suits if they’re fleece-side out. A dainty handshake sends her skin screaming. Cat fur feels like flames licking at her legs.

“I can’t stand it,” she said. “Sometimes I say, ‘I don’t feel like having skin today.’ ”

This is how the 38-year-old Middletown woman has lived for 10 years, ever since she injured her shoulder pulling a patient’s hospital bed out of an elevator.

She is lucky, though. She was diagnosed with reflex sympathetic dystrophy about two months after her injury. Most people who suffer from the chronic neurological disorder see an average of five doctors before they are diagnosed, experts say.

The condition, also known as complex regional pain syndrome, typically develops after an accident, injury or surgery where the bone or soft tissue doesn’t heal normally, allowing nerves to misfire, sending constant pain signals to the brain.

An estimated 200,000 to 1.2 million Americans have RSD, but experts say the numbers are likely higher because it’s invisible, often hard to diagnose and most doctors know little about it. RSD is also controversial because some in medical circles consider it a psychiatric condition.

“It mostly gets blown off and people go off in the sunset,” said Dr. Philip Getson, a family doctor recognized as an RSD expert. He treats Darnley and has a waiting list of patients seeking help.

No cure exists for RSD, only pain management. The most successful treatment — where patients are placed in a drug-induced coma — is experimental, not covered by insurance and available only in Germany, RSD experts say.

It’s the route that Darnley hopes to take.

The first suspected cases of RSD were reported among returning U.S. Civil War soldiers, said Jim Broatch, executive director of the Reflex Sympathetic Dystrophy Syndrome Association in Milford, Conn. Today, the National Institute of Neurological Disorders and Stroke, a part of the National Institutes of Health, supports and conducts research relevant to RSD.

The controversy surrounding the disorder lies in diagnosing it, which relies chiefly on a detailed clinical patient history. But many of the symptoms overlap other conditions. A seemingly minor injury can cause it. The only diagnostic test available is thermal imaging, Getson said.

The lack of objective tests for RSD is problematic and leads to the perception the disorder isn’t real.

“Because we can’t take a picture of it, it must not exist,” Getson said.

OBVIOUS FINDINGS

Complicating matters is that few doctors specialize in RSD, and fewer have a working knowledge of it, said Dr. Robert Schwartzman, chairman of the neurology department at the Drexel University School of Medicine and a longtime RSD researcher. His patient wait list is backlogged almost three years.

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Schwartzman blames medical schools, which do little to teach students about the subtleties and nuances of pain. “The findings are obvious,” he added. “Anyone who doesn’t accept it is an idiot. If you don’t know what [RSD] is now, it’s pretty much like the world is flat.”

When Darnley suffered her shoulder injury, she thought she tore her rotator cuff. Within minutes, her entire arm was swollen. In the hospital’s emergency room, the doctors took X-rays and put her arm in a sling. Later, she saw an orthopedic surgeon who did an MRI scan. Again, her results were normal.

Ten days after she was injured, Darnley said she was at work when her left hand and arm turned colors. “Literally, my fingertips would go black,” she said.

In the office of an orthopedic surgeon, her left arm and hand started turning a mottled dark purple. Later tests confirmed the surgeon’s suspicion of RSD.

Since then, Darnley has endured 76 treatments to temporarily relieve the pain. The pain has spread throughout her body, including her internal organs, she said. She also spontaneously breaks out in “hot spots,” red welts that feel like brush burns.

“That is why I need to go to Germany to put me in remission,” she said.

A CURE?

Over the last 18 months, severe RSD suffers have traveled to Munich for a treatment in which the patient is placed in a five-day coma using massive doses of ketamine, an anesthetic that prevents the brain from processing sensory input. The drug is most commonly used on animals, but also has select human use; in large doses, it has psychedelic effects.

“They all come back better,” added Getson. who said a half-dozen of his patients had the treatment.

An estimated 30 percent to 40 percent of patients emerge from the coma pain free and no longer need pain medication, said Drexel’s Schwartzman.

Once back in the United States, some patients require ketamine booster shots. Otherwise the pain could return, Getson said.

Modified versions of the experimental procedure involving far lower doses of ketamine are available at Cooper University Hospital in Camden and Hahnemann Hospital in Philadelphia. The experimental treatments cost the same here and in Germany — about $25,000 — and commercial health insurance doesn’t cover either treatment.

About 70 percent of patients who undergo treatment in the United States also see great improvement but typically for only three to six months, Schwartzman said.

That is one reason why Darnley wants to take her chances in Germany, hopefully sometime this summer. She describes the constant pain as debilitating and unpredictable.

“I can’t stand to have the hair grow [on] my legs,” she said.

Jo Ciavaglia can be reached at 215-949-4181 or jciavaglia@phillyBurbs.com.