Hope is out there for patients suffering intolerable pain
By RITA ANNAN-BRADY, Staff Writer
Editors note: This is the second in a two-part series on Reflex Sympathetic Dystrophy, also known as complex regional pain syndrome. Part I appeared in last week’s issue.
Chronic pain disease is a life-altering condition. But reflex sympathetic dystrophy (RSD) is chronic pain squared, according to American RSDHope, an online non-profit awareness and support group.
As several local families know all too well, RSD or complex regional pain syndrome, is considered the most painful form of chronic pain that exists. The simple touch of a loved one or a gentle breeze across the skin can cause unbearable pain. Even noise and vibrations can hurt.
The constant pain is described as a burning pain like having a hot poker thrust into the affected area which is usually hot or cold to the touch. The pain often spreads from the original site to many other parts of the body. It can also result in tremors, insomnia and emotional disturbances. Some patients report short-term memory loss or depression.
There are two types of CRPS. Type I, also referred to as RSD, are cases in which the nerve injury cannot be immediately identified
Type II, also referred to as Causalgia, are cases in which a distinct “major” nerve injury has occurred
Among the local families dealing with this devastating condition are the Horvaths, Lees and Savinos of Essex Fells and the Summervilles of Caldwell. Last week’s edition included a story describing the ordeal the Savino and Lee families have endured.
Michelle Horvath, 42, has suffered with the condition for about three years. It began with a tumor in her wrist. When she had surgery to remove the tumor the doctors also cut the median nerve and, she said, she had a reaction to that with a few weeks.
Never having had surgery before, she said her first response was, “Wow, this is a very painful thing.”
Like most people, she had no familiarity with RSD.
But that’s exactly what she was diagnosed with.
Her initial treatment after surgery was physical therapy and drugs including Percoset. But it was not helping much, she said.
Like many in the area she consulted Dr. Daniel Richman, head of pain management and an anesthesiologist at Hospital for Special Surgery in New York City, one of the top doctors for RSD. It was he who diagnosed her RSD.
By now she was having tremors and the pain was so severe she could not endure a physical exam.
“I went to touch my hair and it felt like there was something in it like Brillo or something,” Horvath said. But when she used her other hand she realized it was quite normal and it was the RSD that created the sensation of something rough and painful.
Next morning she had a stellate ganglion block. This procedure is an injection of a local anesthetic into the sympathetic nerve tissue on the either side of the voice box, in the neck. The injection blocks the sympathetic nerves and can help relieve pain.
Her pain medications were also increased and added to. At various times she has been on the painkillers Neurontin, Percoset and Vicodin. She has taken Amitryptolene to help her sleep and Ativan and others to control the tremors. She takes Methadone and has recently gone on Mexiletine. In all she takes 17 pills a day, all in an effort to relief the pain.
Dr. Richman told her she was very fortunate in getting an early diagnosis.
“This can really be a horror,” he said.
When Horvath found she was losing movement in her right arm she went on a regimen of physical therapy twice a week to get the movement back.
“The whole thing was very overwhelming,” she said.
Within three weeks it had spread down into her legs forcing her to crawl up the back stairs of her Essex Fells home.
One of her symptoms, which vary from patient to patient, is that she is always very cold. Some patients are always very hot.
Horvath said she did everything the doctors said to do, because she was terrified.
“I realized how fast and aggressive this is,” she said.
Through “doing her homework” she discovered Dr. Robert Schwartzman and the work he is doing with ketamine in Philadelphia. But at the time there was a two-year waiting list just to get in to see him. Fortunately for her, a family member knew someone who was able to pull some strings and she was able to get in to see the doctor in two weeks taking along her file from Dr. Richman in New York.
She has had ketamine treatments with both Richman and Schwartzman.
The purpose of the ketamine, which is also used as an anesthetic in surgery for large animals, is to quiet the brain.
“With RSD the pain message is constant,” Horvath explained.
The drug is administered to RSD patients through a continuous intravenous infusion of ketamine over a five-day hospital stay.
“It quiets the brain so it can remap itself and allow the pain messages to be turned off,” Horvath said.
Since the procedure is still considered experimental it is not covered by insurance and is costly, ranging from $10,000 to $50,000, according to RSDHope.
The five-day in-patient treatment is maintained by outpatient care every two weeks.
Horvath had been on a waiting list to go to Germany for even more intensive ketamine treatment. Here patients are put in a coma for 10 days while undergoing infusions. According to Horvath, although her husband, Wayne, was worried about the treatment, there have been no fatalities. Three patients developed diabetes as a result of a bad batch of the drug, according to Horvath.
This month she did get the opportunity to go to either Germany or Mexico to receive the treatment but had a change of heart.
“I found out a lot of patients are relapsing after a couple of months,” she said in a phone call Monday, July 28.
So she has decided to hold off on that for now and was scheduled to go for a new ketamine treatment under general anesthesia on Tuesday, July 29. The goal is to give her as high a dose as possible to get it into here system, Horvath said.
A former freelance photo stylist, Horvath said she is unable to work now. She suffers from constant insomnia.
“It’s been horrible,” she says.
Caldwell Resident Seeks Treatment
Corrine Feidt Summerville, 47, who lives on Westville Avenue in Caldwell, is another local resident who has sought treatment from Dr. Richman in New York City, although she had suffered from symptoms for six months to a year before his diagnosis.
She, too, has received a slew of therapies including epidural injections, dozens of trial and continuing prescription medications, physical therapy, hyperbaric oxygen therapy and surgical installation of a spinal cord stimulator.
Her latest treatment earlier this month was ketamine with Dr. Michael Goldberg at Cooper Hospital Camden. After getting some pain relief from the drug Namenda, she underwent the ketamine with disappointing results.
“It worked for the first couple of days,” her husband, Gary, said. But over all Dr. Goldberg determined it was not successful for her. She has now returned to the Namenda and is scheduled to see Dr. Schwartzman in August.
A former medical office assistant, Summerville is now classified as federally disabled and can no longer work.
Her husband works full time as a sales consultant. They have three daughters, all in their 20s, who live at home.
“All family members try to help with regular cleaning, cooking and other jobs around the house, but busy schedules make it difficult,” Mr. Summerville says.
Reduced income because of his wife’s disability also makes life stressful for all, not to mention the emotional upset relating to her condition and pain, he says. In addition, she has to spend many hours alone, he said.
Mrs. Summerville’s condition seems to stem back to an accidedent four or five years when she slipped on the steps while carrying a box of books. This results in a disk injury and a discectomy about a year later. The RSD was diagnosed shortly after that.
RSD has affected her vital functions including vision, arms, legs, hands and feet. She is in constant pain ranging from tolerable to severe. She also suffers from depression.
Like others her symptoms also include sensitivity to touch and swelling in the heat. The affected areas turn blue when cold and she suffers from shaking of her arms, hands, legs and feet, similar to the symptoms of Parkinson’s disease, her husband says.
RSD patients are quick to point out that the symptoms are wide-ranging and different for different people. The condition often leads to feelings of helplessness and depression.
But Dr. Schwartzman says it’s important to understand that this is not a psychological condition. The injury that leads to RSD changes the genetics of the spinal cord, he said.
“It is very important to stay as proactive as possible as pain is unavoidable, whether inactive or active, so not giving in to depression and desperation are very important,” Mr. Summerville stressed.
Having each other in the community seems to be of help to the patients we talked to you. It is helpful to have others who have experienced similar problems to relate to you. Perhaps only they can truly understand what they are going through.
Another source of support for people with RSD/CRPS and their families is the Milford, Conn.-based group Reflex Sympathetic Dystrophy Syndrome Association which also has a small office in New York City and a Web site chockfull of information. The group has slightly more than 7,000 members and, since 1992 has funded more than $1 million in research.