RSD Treatment
By Linda Wondoloski
BCT staff writer
lwondoloski@phillyBurbs.com

People living with reflex sympathetic dystrophy describe it as painful, debilitating, frustrating, evil.

It means endless visits to doctors offices, countless prescriptions filled and refilled. It also may include frequent visits to a gym or clearing space in a room for exercise equipment. It surely requires countless contacts with insurance companies over coverage for medications and treatments.

Those with RSD, also known as complex regional pain syndrome, must restructure their lives to accommodate limited ability, often relying on others to handle duties they can no longer handle. More often than not, they have to give up their jobs in order to cope with the pain, movement disorder and other physical and emotional effects of the condition affecting the sympathetic nervous system, which can be triggered by an injury or surgery. It can even lead to suicide.

Diagnosed with RSD in 1988, Suzy Holcomb of Delran has become an expert at coping. It starts with her attitude.

"I will not let this evil thing take over. I will fight this thing to the very end," said Holcomb, 54.
And fight she does. She drives, sometimes several times a day, to exercise in the Olympic-size pool at the Family "Y" of Burlington County in Burlington City. About three times a week, Holcomb uses the treadmill, flex bars and weights in the exercise room. Sometimes she goes to the "Y" just to sit in the sauna to ease her breathing, which has been affected by the RSD. She traces the RSD to a pencil jab she suffered as a child.

In between household duties, trips to the "Y," church-related activities and the RSD support group she founded, Holcomb visits "a myriad of doctors." She also has taken part in RSD and drug studies, including a one-day study in April involving genetics at the National Institutes of Health in Bethesda, Md.
Then there are the medications. She takes Topamax and Lorcet to ease the pain of RSD, Zanaflex to control muscle spasms, Lipitor to manage cholesterol levels, Tenormin to control her heart condition and Lidoderm patches to relieve pain on the spot. As backup, Holcomb keeps on hand a supply of nonprescription-strength Anaprox.

Holcomb also has tried acupuncture and has learned to use imagery and relaxation techniques to release therapy to ease pain, which can be triggered by stress. She finds strength and inspiration in her religion and in the book, "Living with RSDS: Your Guide to Coping with Reflex Sympathetic Dystrophy Syndrome."

Holcomb always is on the lookout for helpful gadgets. A handled sponge that holds dish detergent, for example, might also hold shampoo so she could wash her hair by herself. After a tumble down stairs in 1999, she used a mattress pad outfitted with 300 magnets to ease pain.

A portable, battery-operated unit that uses a special patch and al-ternating pulse patterns "helps quell a lot of the pain," Holcomb said. She also has tried a meilus machine, which uses a robotic arm that presses against skin and muscles, as a pain- relieving tool.

A key element in handling their condition, say RSD sufferers, is support from family and friends. Holcomb said her husband, Tom, and sons, Brett, 30, and Jason, 23, have been "very supportive."
Ursula Weed of Palmyra credits understanding family and friends with pulling her through the difficult diagnosis period and the treatments she has undergone.

"A lot of people donâ??t have that," said the 27-year-old. Since RSD magnifies pain, those suffering with the condition often are faced with doubts about their pain.

"I was lucky. I donâ??t know if I could have made it without them," said Weed, who lives with her parents, Betty and Frank Weed Sr., her sister, Sophie and brother, Matt.
Injured in an automobile accident in January 2000, Weed underwent arthroscopic surgery on her left knee and physical therapy for the pain and muscle spasms in her neck and back. While waiting for insurance company approval for an intra-thecal pump â?" which she gained following a legal fight and court order and she had two nerve blocks. By then, the RSD had caused her toes to curl under and turn blue; she was walking on her toenails.

Implanted under her skin, Weed's pump containing the muscle relaxer baclofen came about through the recommendation of her physician, Robert J. Schwartzman, a professor and chairman of the neurology department at Drexel University College of Medicine in Philadelphia. Schwartzman sees patients at Hahnemann University Hospital in Philadelphia.

Schwartzman also treated Weed with the anesthetic ketamine, which required a three-day inpatient stay at Hahnemann in March. The procedure worked â?" Weed was able to move her left foot and wiggle her toes something she had not been able to do in two years.

Although she knows the ketamine treatment will eventually need repeating and she still uses the baclofen pump for "pain and spasms off and on," Weed said, "This is the first time in nearly two years that I can say I feel good, but I am afraid to say it out loud."

To help stay fit, Weed uses a treadmill and goes for walks with her mother, sister and 3-year-old miniature poodle, Chloe.

Tabernacle resident Kathy Henson, who developed RSD following an injury at work in December 1989, pointed to the strain RSD places on relationships.

The 52-year-old has RSD throughout her body, as well as fibromyalgia. Although Henson, her children and her husband, Joseph Henson Sr., who has been helpful throughout her illness, taking on household duties, grocery shopping and attending meetings of the RSD support group she oversees, have survived the strain, it has not been easy.

Friends, on the other hand, have not been as supportive, she said. No longer able to take part in many social activities, Henson said, "I have lost a lot of friends."
Henson said she also has struggled with insurance coverage.

To relieve the symptoms of RSD, Henson does physical therapy, takes mild medications (RSD has caused a sensitivity to drug treatments) and practices self-hypnosis for pain management. Water therapy is especially helpful, yet she has been unable to convince her insurance carriers to cover the purchase of a small indoor pool for her therapy.

"I find my biggest fight is with the insurance company," said Henson.

Echoing that sentiment is RSD patient Beatrice Siravo of Philadelphia.

"It is s so degrading what you have to go through to get treatment," said Siravo, 47.

Injured in an automobile accident 18 years ago, Siravoâ's appeal to Independence Blue Cross for coverage of ketamine treatment was denied April 22 because the treatment is considered experimental. A patient of Schwartzman, Siravo wants to undergo the treatment at Cooper Hospital-University Medical Center in Camden. She plans another appeal.

According to William Ward, a spokesman for Independence Blue Cross in Philadelphia, the company "does not reimburse for the intravenous administration of a number of agents â?" including lidocaine and ketamine â?" in the treatment of Complex Regional Pain Syndrome (CRPS), formerly known as Reflex Sympathetic Dystrophy Syndrome (RSD); these agents are regarded as experimental/investigational because the safety and efficacy has not been established in the available published literature."
Ward, who cited lack of FDA approval for these drugs in treating RSD, said his company does reimburse (depending on the benefits plan) for a variety of treatments, including implant-able devices, physical, has been involved in a pilot, pain-management program at the hospital.

The hospital-based treatments often come after other methods have proven ineffective.

Getson, who said he uses a combination of treatments, listed the treatments used for RSD. They include physical therapy, occupational therapy (where appropriate), neuropathic drugs such as Neurontin, anti-depressants because he said, "every RSD patient has some level of depression," medications to relax muscles and reduce inflammation (where appropriate), pain medications, interventional pain management such as nerve blocks, hospital-based treatments and, as a last resort, intra-thecal pumps with medication for pain and muscle spasms.

Referring to a fear that surgery aggravates RSD, Get-son said, "Itâ??s just not true." He said steps can be taken to prevent the condition from spreading.

In his research, Getson has found thermal imaging an effective tool for diagnosing and pinpointing RSD. The noninvasive technique employs an infrared camera, which transmits data about skin temperature to a computer. The computer converts the data to images that can be displayed in color, allowing physicians to study variations in heat patterns for clues about the condition.

Getson and Weed were among those who attended legislative hearings in Trenton that led to approval in March of New Jerseyan's Reflex Sympath-etic Dystrophy Syndrome Edu-cation and Research Program Act.

The measure establishes within the state Department of Health and Senior Services an RSD education and research program that will include a public outreach campaign. Supporters hail the legislation as a major step toward promoting understanding and effective treatment of RSD.