Monthly Archives: March 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
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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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Dahl seeks to raise awareness of RSDS


Dahl seeks to raise awareness of RSDS
Painful disease impacts 500,000 Americans


SPRINGFIELD – State Sen. Gary Dahl, R-Granville, is introducing legislation to promote public awareness and prevention of Reflex Sympathetic Dystrophy Syndrome, a painful neurological disease.

Senate Bill 1535 establishes the RSDS Education Program to raise awareness and stress early detection, diagnosis and treatment.

The disease impacts more than 500,000 Americans. Symptoms include burning pain, changes to bones and skin, tissue swelling and extreme sensitivity to touch that, if untreated, results in permanent deformity and chronic pain.

Dahl sponsored the measure after Bea Danko, a Streator resident who suffers from RSDS, asked his help in having state government raise public awareness of the syndrome.

“I attended a RSDS support group meeting headed by Ms. Danko, and the stories I heard were chilling,” Dahl said. “Everyone told how the illness impacted their lives, and they were suffering physically and emotionally.

“It’s crucial we do more to raise awareness of RSDS, so we can help those who suffer from it and enhance early detection.”

SB 1535 also requires the Illinois Department of Public Health to work with health care providers and local health agencies to coordinate and promote professional education programs to educate doctors, nurses and other health specialists on how to best treat those with the syndrome.

The bill would allow the state to accept private gifts, grants and donations to help pay for the program.

“We have a long way to go in the battle against RSDS,” Dahl said. “The causes are still not known, and many health specialists aren’t familiar with the symptoms. It’s crucial we do more to educate patients and doctors alike on how to best diagnose and treat this serious condition.”

The Senate Public Health Committee sent the legislation Tuesday to its Subcommittee on Special Issues. Public Health Committee chairman, William Delgado, D-Chicago, told Dahl he would co-sponsor the legislation following Gov. Pat Quinn’s budget address later this month.

“I look forward to working with Sen. Delgado and both political parties to get this measure signed into law,” Dahl said. “It’s time to pass a common-sense measure that will go a long way toward helping people with this debilitating disease.”






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Something For The Pain


Columns

Something For The Pain

While a child may cry when experiencing pain from a scraped knee, broken bone or other one-time injury, the reaction of pediatric patients with chronic pain may be quite different. Some of the smallest patients can not communicate their pain and others often stare out a window or disassociate themselves from what they are feeling on the inside.

For nurses who must respond to a pediatric patient’s pain, reading the signs can be similar to deciphering a foreign language. Body language, parent’s assessments and targeted programs are all tools nurses use to help this patient population on the road to recovery.

Reading the Signs

Nurses on the floor use various assessment tools to read a patient’s pain level, especially when that patient is too young to communicate their own pain. An infant may draw in their arms and legs when they are uncomfortable or may act fussy when they experience a lot of discomfort.

Suzanne Porfyris, MSN, APN, PCCNP, anesthesia pain service at Children’s Memorial Hospital in Chicago, said she uses a standardized scoring system to help alleviate her patient’s pain.

“We teach our nurses and our patients’ families to look for the signs, and we have scales that can help us score babies,” she said. “We also understand that for the kids who can communicate, one person’s pain level is not the same as another’s.”

Porfyris instructs nurses to believe the patient when they communicate but not to ignore other possible signs of pain. She said just because a patient is not writhing in agony doesn’t mean they aren’t trying to escape the discomfort.

“When a child is sleeping a lot, it is a misconception that they aren’t feeling any pain,” she noted. “Kids who seem disinterested or who lose themselves in video games may look fine, but just because they are able to get their focus on something else doesn’t mean there is no pain.”

Listening to the family members can also alert nurses on the unit about the level of pain the patient is experiencing since the parent is around the child all of the time and can tell a nurse when he isn’t acting like himself. In many cases, when pain is managed properly, nurses get a chance to see a major difference in the child’s countenance.

“I may only see them twice a day so the parental input is important in what we can do for them and how we go about it,” Porfyris said.

Special Circumstances

Sometimes pain is an aftereffect of an illness or a surgical procedure; other times it is a symptom.

At the Mayo Family Pediatric Pain Rehabilitation Center (PPRC) at Children’s Hospital Boston at Waltham, MA, patients with Complex Regional Pain Syndrome (CRPS), also known as Reflex Sympathetic Dystrophy (RSD), are admitted to a comprehensive multidisciplinary program for rehabilitation and treatment.

RSD is a rare neurological condition that affects skin, muscles, joints and bones, causing severe burning and aching pain, skin pigment changes and temperature changes, and excessive sweating and swelling of extremities.

A division of the Pain Treatment Service at Children’s Hospital Boston, the PRRC opened in June 2008 and takes a simple approach to treatment: intensive physical and occupational therapy, and cognitive behavioral therapy to retrain the brain’s pain response.

For many children, RSD can be successfully treated with outpatient physical therapy and cognitive behavioral therapy. The PRRC treats the small percentage of pediatric patients who are refractory to conventional treatment.

Judy Gaughan, MSN, RN, clinical coordinator of the PPRC, said the staff uses a multidisciplinary approach to help patients control their pain and improve their function.

“This is an incredibly painful condition and many of our patients have not ambulated or used the affected extremity for months, or even over a year, in some cases,” she said.

Gaughan added the program treats only four patients at a time, with the length of treatment varying from 3-5 weeks, depending on patient needs.

Retraining the Pain

Cognitive behavioral therapy is a key component of the program. Patients learn relaxation, guided self-imagery and deep breathing as tools to gain some control over their pain.

Gaughan said some of the patients admitted to the PPRC have been unable to tolerate textures of clothing or to tolerate wearing socks and shoes.

“They have withdrawn from their peers and have difficulty attending school,” she said. “The kids come from all over the U.S. and for many of them it is the first time they meet another person with the same disease.”

By working with a variety of disciplines, including physical therapy and occupational therapy specialists as well as medical staff, psychologists, nutrition specialists and even teachers, this program helps get pediatric pain under control. Since the inception of the Pain Treatment Service in 1986, more than 750 children with RSD have received treatment.

“This program is a comprehensive, multidisciplinary way of retraining kids to deal with their pain and regain their lives,” Gaughan said.

Julie Young is a regular contributor to ADVANCE.


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