By BETSY BETHEL
Life Associate Editor
Ever since 11-year-old Grace Taylor of Wheeling was able to talk, she told her mother her legs hurt. As she grew, she was able to be more articulate: "She said it felt like bees were stinging her all up and down her legs." She also complained of tummy aches and that she couldn't feel her feet. She cried and whined ... a lot.
Grace Taylor of Wheeling rolls over for the first time after surgery to hug Elmo, the labradoodle therapy dog at UPMC Children’s Hospital in Pittsburgh.
Her mother, Jennifer Taylor, took her to the doctor over and over again. Grace had blood tests, upper and lower gastrointestinal scopes, blood cell counts- you name it. Both her doctor and even her mother began to wonder if her pain was psychosomatic. She even was tested for ADHD.
Finally, three years ago, Jennifer sought a second opinion. At Dr. David Mosman's intake evaluation, he ordered an MRI. He was pretty sure it wouldn't show anything, Jennifer said, but he wanted to be positive before sending Grace for a thorough psychiatric evaluation.
"She had the MRI at 6, and at 7:30, I got a personal call from Dr. Mosman" who told her Grace had syringomyelia, a rare, chronic spinal cord disorder, Jennifer said. With syringomyelia, a syrinx - like a bubble, Jennifer said - formed in the spinal canal, causing spinal fluid buildup that places extra pressure on the spinal cord. Followup tests showed she had a tethered spinal cord, a congenital disorder that keeps the spinal cord from elongating properly.
Grace was 9 when she underwent surgery to free the spinal cord at UPMC Children's Hospital in Pittsburgh. She also had a shunt placed in her spinal cord to relieve the pressure. Jennifer said the spot where the pressure was built up correlates to the nerves that affect the feet, legs and gastrointestinal tract.
The surgery was risky, Jennifer said. They had to weigh the fact that Grace's pain wasn't as severe as many other syringomyelia patients against the possibility that waiting too long could cause severe spinal cord damage, even paralysis.
The surgery was painful and a complication resulted in a four-day stay turning into a two-and-a-half week ordeal, Jennifer said. She praised the surgeons and hospital staff, however, especially noting the use of therapy dogs in recovery and physical therapy. When Jennifer had to lie still on her back and be kept awake for two days, they brought in a beagle to lie next to her face to help lift her spirits, for instance. And when Grace was allowed to move but was stiff, they brought in Elmo, a labradoodle, who laid next to her on the hospital bed, enticing her to roll over and hug him.
The surgery seems to be a success.
Grace is now a sixth-grader at Sts. James and John School in Benwood. She swims for a YMCA league and has a team of 35-40 people lined up to walk in the Together We Can Walk & Roll 5K event this Saturday at Wheeling Heritage Port.
"We were lucky because Grace actually has not just stabilized but gotten better," Jennifer said. The syrinx has shrunk from 7 millimeters to 6 millimeters. She still gets numbness in her legs, however, and has trouble sleeping. She has no reflexes and will never be allowed to bounce on a trampoline or ride a roller coaster.
"It's a degenerative disease, and we know we're not out of the woods. ... But we really are lucky. And you know, when it's a good day, you just enjoy the good days."