Posted: Friday, July 25, 2008 12:00 am
By RITA ANNAN-BRADY, Staff Writer | 0 comments
Editors note: This is the first in a two part series on Reflex Sympathetic Dystrophy, also known as complex regional pain syndrome.
ESSEX FELLS – A seemingly routine sports injury suffered during a high school softball game last year turned out to be just the beginning of the pain for Rosie Savino of Roseland Avenue.
Like many high school athletes everywhere, Savino, who just turned 17 in June, suffered what was first thought to be a minor injury while at bat in the Essex County semi-finals at West Essex Regional High School in the spring of 2007.
She didn’t think too much about it at the time, although it was very painful. It was much like the kind of injuries suffered by athletes and others all the time. She played on through the pain.
Initial X-rays failed to show a fracture but a second set of X-rays about two weeks later revealed a fracture of her left thumb.
That was in May 2007. In August, Savino was diagnosed with Reflex Sympathetic Dystrophy (RSD) otherwise known as Complex Regional Pain Syndrome (CRPS). Her life since has changed.
A relatively unknown disease to most people, RSD/CRPS can affect anyone. Although it is more common between the ages of 40 and 60, it is becoming increasingly prevalent in children. Described as a progressive disease of the autonomic nervous system, it often follows a simple trauma like a fall or sprain, a broken bone, a sharp force injury such as a knife or bullet wound, or even heart problems, infections or surgery. But in about 30 percent of cases, there is no specific injury.
According to the American Society for CRPS, symptoms include intense burning, aching, tingling or crushing pain, which can affect one, two or even all four extremities. It can also manifest in the face, shoulders, neck eyes or other areas of the body.
In 70 percent of cases, the pain spreads to another part of the body from where it originated. Symptoms, often much more than one would expect from the specific injury, can occur a few hours or a few days after the trauma.
Savino is just one of four local people with the condition The Progress spoke to in the past few weeks.
In Savino’s case, though fairly localized initially to the left hand and wrist, by November it had spread to her knees, ankle, feet and shoulder. She has also experienced blurred vision in the left eye and sporadic loss of hearing and a tremor.
The Savinos think themselves fortunate to have found good and effective medical treatment through the help of a neighbor and friend, Michelle Horvath of Runnymede Road who also has RSD.
“We were very lucky that through the help of [Horvath] we got to some of the top RSD doctors in the country, if not the world,” said Savino’s mother, Amy Savino, said.
“With aggressive treatment s, he (Rosie) has attained some remission of her condition and is fighting to retain it and return to school.”
Through Horvath, who has had RSD for three years, the Savinos were able to learn more about the condition and, they say, were prepared for some of the things to come. They were also able to get to some of the best doctors.
After starting out treatment in Morristown with medications and nerve blocks that had virtually no effect, Rosie Savino ended up in November seeing Dr. Robert Schwartzman in Philadelphia who specializes in ketamine treatment for RSD patients.
After being on a waiting list until Jan. 28, she was admitted for a five-day in-hospital ketamine treatment at Hospital for Special Surgery in New York City with Dr. Daniel Richman who collaborates with Schwartzman, who only treats adults.
That made a huge difference Savino said.
“It [her body] stopped moving and it was able to be touched and I could walk normally,” she said. Her eyes have been fine since she said.
Ketamine therapy is a controversial treatment considered experimental by the Food and Drug Administration. The strong anesthetic, known on the streets as Special K, is administered to RSD patients in one of two ways. One consists of a low dose infusion over several days of hospital or out-patient treatment. The other, which is not approved for use in the United States yet, consists of high doses of ketamine to put the patient in a medically-induced coma followed by the continuous infusion of the drug for several days. The latter is performed in Germany and Mexico.
According to the theory of Dr. Schwartzman and researchers in Germany, the ketamine manipulates N-methyl-D-aspartate (NMDA) receptors which permit the transfer of electrical signals between neurons in the brain and the spinal column. Studies show that RSD results when these receptors malfunction causing pain to be magnified. Ketamine, it is believed, might reboot aberrant brain activity and thus normalize the pain messages.
Rosie Savino has had four outpatient treatments at St. Luke’s Roosevelt Hospital in New York which consists of four to five hours of ketamine treatment for two days in a row.
She was able to stay in school until November when the RSD started spreading to other areas of the body. According to research, the condition does spread in about 70 percent of cases, eventually going to the spinal cord then the brain which is why it can manifest in other areas.
“In trying to explain it to people,” Mrs. Savino said, “we say it’s like having MS, muscular dystrophy, fibromyalgia and Parkinson’s all rolled into one.”
Savino was out of school solidly for about three months but there were many other days when she could not go because of the pain and because often she was only getting about an hour’s sleep a night. Insomnia often goes along with RSD/CRPS.
“Sometimes I’d be going to school with no sleep at all,” Savino said.
In all she probably missed about four and one half months of school, her mother said, noting that the school was wonderful in helping her keep up with work through its home instruction program.
She’s not sure yet if she will be able to return to softball.
“I’ve not been given a definitive answer,” she said. “I was still planning on helping the softball team this year but that didn’t work out,” she said.
Previously she had worked with players on their hitting. Not only was she the catcher for the team, she also had the highest batting average and number of home runs.
“She was a force,” her mom said wistfully.
Rosie Savino attributes her stubbornness with getting her through as well as she has.
“I’m more stubborn than a mule,” she said.
“I don’t mind pain that much. I really don’t,” Savino said. “Writing was one of the worst parts. But some people, if they don’t understand it, some of them try really hard but others they just start ignoring you.”
She expressed disappointment that some individuals at school seemed to abandon her. On the other hand, she said, others had been very supportive, especially English teacher Ann Baney and some other teachers.
Now considered in remission, although she has a lingering related knee injury, Rosie Savino was able to finish 11th grade and do well in most of her classes through a combination of home instruction and return to school in April.
For 15-year-old Chris Lee, also of Essex Fells, the problems began early this year after surgery on Dec. 26 for a cyst in his heel, followed by bone grafts. Shortly after he was diagnosed with RSD his mother, Linda Lee, said. He has been out of school since Christmas.
Her son had sprained his ankle and had been on crutches since Halloween, Mrs. Lee explained. It was this that led to the discovery of the cyst. She theorized that he had perhaps been in an air cast too long from Halloween till Christmas without physical therapy and that was how RSD set in.
The pain of RSD has been excruciating for Chris Lee, his mother said.
“No medication worked on him,” She said. He never found any relief.
“It’s been a nightmare,” she said. “The pain has been so excruciating, he’d black out.”
What has helped and given her hope has been the physical therapy treatment he’s been receiving at Children’s Hospital in Philadelphia, Pa., where the program is intensive physical therapy which desensitizes the nerves and helps them to start recovery. He’s on the waiting list now to be admitted to the hospital for five hours a day of physical, occupational and psychological therapy.
“We’re hoping that by the time they have space he won’t need it,” she said.
Mrs. Lee says the prognosis is good for her son to return to school.
“He was a freshman at West Essex during his illness where he received wonderful support from his guidance counselor and tutors,” she said. In September, he will be a sophomore at Seton Hall Prep in West Orange.
“He’s been amazing,” she said, noting he plays guitar and writes music. “He’s written six songs and a lot of it is about the pain and about his experience,” she said.
One of the concerns the Savinos and the Lees have is to educate not only the public about this condition, but also the coaches and teachers. Too often, they say, coaches and even parents, push student athletes to “play through pain,” ignoring the warning signs of a possible serious injury or, as in the case of RSD/CRPS, a devastating condition that can result in lifelong disability.
Mrs. Lee said athletic departments especially need to be aware of the condition and know what to look for. She speculated that keeping an injury in a cast for too long might lead to developing RSD.
While Amy Savino does not expect to be able to play any sports for the foreseeable future, her mother says “With aggressive treatment and her rugged determination, hopefully, she’ll return to some of the activities that she loves.”
Near-term plans are for her to return to school on a consistent basis and to attend college.
In January, this year Gov. Jon Corzine signed a bill mandating increase awareness and education of RSD/CRPS within the medical community. The condition is now being recognized and diagnosed more frequently, the first step in its effective management.
Because RSD or CRSP affects different people in different ways it’s hard to tell people what to be on the look out for, Rosie Savino says.
“But if you have a sprain or something and it lasts a long time or if the doctor says it hurts more than it should, get it checked out, or if you start twitching,” she said.
It’s important to ask doctors to consider the possibility of RSD and check it out, Mrs. Savino says.
“The worst that can happen is you’re wrong.”
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