Monday, June 28, 2004
Pagan's daughter, Lillian, raises RSD awareness as a pageant winner.
By WILLIAM K. ALCORN
VINDICATOR HEALTH WRITER
CAMPBELL -- Aida Pagan loved to take her children to functions at St. Rose of Lima Church.
She loved to dance and sing. Born in Puerto Rico, she especially likes the Spanish numbers.
She even liked to clean house.
But in 1992, Reflex Sympathetic Dystrophy stole those simple pleasures, and gave her a life of pain that for years left her drugged, often bedridden, and doubtful about her sanity.
It would be three years and many doctors later before she would get a correct diagnosis.
RSD, also known as complex regional pain syndrome, is an agonizingly painful neurological disease that is chronic and progressive if not treated within three to six months of onset.
Pagan's ordeal began in November 1992 when she injured herself working at Steel City Corp. A muscle strain between her neck and shoulder turned into a nightmare of pain that continues to this day, abated only by frequent nerve block shots, a spinal cord stimulator implant and painkilling drugs.
Her RSD symptoms included severe muscle spasms, uncontrollable shaking, easy bruising, sweating and chills and severe swelling all over, said Aida's husband, Abraham.
"When the pain started running down my arm, the doctors thought it was carpal tunnel," she said.
Pagan, 52, formerly of Youngstown, tried returning to her job, but after three years of working on and off, she had to quit, still not knowing what caused the pain.
"I had doctors tell me it was all in my mind," she said.
Finding help
Finally, in desperation in 1995 she turned to the Yellow Pages in the telephone book, where she found Dr. Jorge A. Martinez's ad for pain management.
Pagan said Dr. Martinez quickly diagnosed her RSD and sent her to the Cleveland Clinic for treatment.
"Dr. Martinez saved my life," Pagan said.
The quality of her life is much better since she was implanted with a spinal cord stimulator, which blocks some of the pain. She also gets nerve block shots twice a month.
She still has to take a lot of pills, but the stimulator and nerve blocks have helped reduce her pain pill intake, said Aida's daughter, Margoli Pagan, of Campbell.
Without the stimulator, she would be in bed, knocked out with medication. It gives her a decent life. And the stimulator is not addictive like the medications, Margoli said.
The spinal cord stimulator uses battery generated electrical impulses via wires to the spinal cord to block pain from being perceived in the brain. Instead of pain, Aida feels a tingling sensation.
Without quick diagnosis, the prognosis for remission or cure is not good. RSD can spread from the extremities to the entire body. In Aida's case, it has started to affect her right leg.
The outcome
Once it spreads, there is no way a person can work, said Sandi Gabriele of Boardman, president and co-founder of the Northeast Reflex Sympathetic Dystrophy support group.
In Pagan's case, it was three years before she was correctly diagnosed. Even then, it took the Ohio Bureau of Workers' Compensation until 1999 to recognize her condition as RSD for treatment purposes, said Margoli.
Unlike Pagan, Gabriele was correctly diagnosed within six weeks of the onset of RSD.
But she was unable to get approval from Workers' Compensation for payment for treatment within the three to six month window of opportunity when the disease is most curable. Gabriele said a Workers' Compensation doctor denied her claim without seeing her.
"I hold him personally responsible for ruining my life," she said of the doctor.
Gabriele's RSD developed from a broken thumb she suffered when trying to restrain a child while working as a teachers aide in the Youngstown City School District.
Taking control
Like Pagan, Gabriele resorted to desperate action when she could not get the help she needed.
She wrote to President Clinton's wife, Hillary, and other women in positions of authority.
"I got a response from the White House and then a call from the Department of Labor. One week later, I got my stimulator," she said. Gabriele, 57, who has had RSD since 1991, has two spinal cord stimulator implants, one for her upper body and one for her lower body.
She says the pain of RSD is like putting the affected area in the boiling french fry grease at McDonald's. She said RSD is known as the suicide disease, because so many victims cannot tolerate the pain over time.
The Northeast Reflex Sympathetic Dystrophy support group is affiliated with For Grace, a California based organization dedicated to raising awareness about RSD.
About 6 million Americans have been diagnosed with RSD -- more than multiple sclerosis, AIDS and breast cancer combined -- yet RSD remains virtually unknown, according to For Grace. Aida said she has gotten great comfort through membership in the local RSD support group.
Aida and Abraham have four children: Magoli; Lillian Mendez in California; Marysol Pagan, a June graduate of Ohio State University; and Abraham III, who is studying criminal justice at Kent State University.
Lillian, 28, of Redondo Beach, Calif., an administrative assistant in the retirement planning department of Keenan & amp; Associates, is also a model and winner of the Mrs. Redondo Beach International beauty pageant.
Because of her mother, Lillian wanted to make RSD her charity during her reign as Mrs. Redondo Beach. "RSD is a disorder I knew through my mother's eyes. Though I could never feel her pain, I yearned to find a cure to stop all the puzzled looks when one says RSD," Lillian said.
XFor more information about For Grace, visit www.forgrace.org. To contact the Northeast Reflex Sympathetic Dystrophy support group, call (330) 788-1634.
alcorn@vindy.com