by Nicole Falco
While still attending Hewlett High School, Mirsky was voted "Spirit Queen" two years in a row. She was also a yearbook editor, president of the Key Club, on the prom committee, a member of the Long Island Strings orchestra and named All-County for music.
Mirsky's life changed drastically last May. One day while at her computer Mirsky looked down and noticed her left leg was blue. She was diagnosed with Complex Regional Pain Syndrome or CRPS, formerly known as Reflex Sympathetic Dystrophy.
CRPS is a rare nerve disorder that mostly affects women over 40-years-old, according to Dr. Dima Rosen of Mount Sinai Medical Center in Manhattan. Rosen said Mirsky was diagnosed with Type 1 CRPS, which means the disease is the result of a non-nerve injury and can affect all nerves. Doctors are not sure what triggers its onset.
Symptoms include a constant, intense burning pain in a limb that once begun, never goes away. Limbs can turn blue, purple and even black. The slightest touch or change in temperature can cause distress to the limb. Other symptoms include burning, swelling and freezing. The disease can also spread. Mirsky said her right leg and left arm are also affected, though not as severely.
"My life was so filled. Now all it consists of is waking up, eating, throwing up and watching TV," Mirsky said. Mirsky frequently vomits because of the medication she takes and has lost 20 pounds from her already thin frame since May.
Mirsky lives with her family, which includes her mom, Gail, her dad, Perry, and 13-year-old brother, Joshua, a student at Woodmere Middle School.
Her health insurance company provided Mirsky with a list of doctors in their network for her to consult. She went to many of these doctors about her condition and underwent numerous treatments, including spinal blocks, femoral catheters, spinal catheters, aqua therapy, cranial massages and hospitalization. According to Mirsky, the doctors did not fully understand how to treat the disease. Then she met Dr. Rosen.
"In the past, doctors have looked at my leg dumbfounded and stupefied. I always felt like a freak show in the hospital," Mirsky said.
Unfortunately, Rosen is not part of the network of approved physicians in her HMO plan. Mirsky has appealed to the company, and their spokesperson told the Herald Wednesday that they are reviewing the case.
"It stinks that your life is a business. [Insurance companies] care more about money than actually saving a person's life," Mirsky said.
On Feb. 27, Rosen is scheduled to implant a temporary Dorsal Column Spinal Cord Stimulator into Mirsky's lower back. If the trial operation is successful, Mirsky will be implanted with a permanent one in mid-March.
The stimulator will be implanted in her epidoral space to indirectly stimulate the spinal cord, Rosen said. Basically, the stimulator will block the message of pain sent by Mirsky's left leg from reaching her brain. If the operation is successful, Mirsky will feel a mild tingling sensation instead of the intense pain in her leg. With her pain under control, Mirsky will finally be able to undergo physical therapy, which could change the course of the disease, Rosen said.
The stimulator equipment alone will cost as much as $17,000 not including hospital and doctors' fees, Rosen said. Without the procedure, Rosen said Mirsky could "miraculously improve," but it's more likely her leg will atrophy and she will continue to live with chronic pain.
Gail, Perry and Joshua have watched her transform from a young woman who would set her mind on a specific goal and then achieve it to a young woman who cannot bear to wear socks on her feet, most days, who cannot wear shoes or jeans, who cannot sleep with a blanket because the pressure of it causes pain and who cannot continue her studies at college until something can be done about this debilitating disease.
"Fallon thinks I'm in denial, but I know exactly what could happen, might happen," Gail said. "I live for today and I'm not going to be pessimistic in front of her. When the doctor says worry that's when I'll worry."
Her parents own their own business and have been able to spend time helping her fight the disease. However, while they make too much money to be eligible for Medicaid, they do not make enough money to pay for their daughter's treatment.
"I'm 20-years-old and I'm not ready to give up my life yet," Mirsky said. "I'm tired of getting poked. I'm tired of getting prodded. I just need this to go away so I can get out of my house."
To offer Mirsky help or to simply send her a note of encouragement, which she said she would greatly appreciate, her e-mail address is spunkyfal@aol.com
