Trying to get past the pain
Bethlehem teen athlete hobbled by rare disorder
| By ALAN WECHSLER, Staff writer
First published in print: Sunday, June 14, 2009
It seems Connor Menneto never met a sport he didn’t like.
Baseball was his favorite. He started at T-ball and moved on to Babe Ruth and the Bethlehem High School Eagles.
But he also shot baskets for Holy Cross parish, played football at Bethlehem and wrestled at the Colonie Youth Center. In winter, he snowboarded.
“That was my life,” the 17-year-old Delmar resident said. “Sports.”
Now, Connor has been benched. It might be for life.
It began Jan. 9. He was walking to work at Four Corners Luncheonette. And, inexplicably, his left leg started to tingle.
Four hours later, Connor was in agony.
“I couldn’t stand on it,” he remembered. “I couldn’t touch it.”
It took some work to find out why. X-rays, an MRI, blood work. Tests for blood clots, leukemia, Lyme disease, sepsis. Nothing.
Finally, a bone scan with radioactive dye determined the culprit: Complex Regional Pain Syndrome (CRPS).
It’s a mysterious disease that has torn apart this high school junior’s world.
Strange that a life of pain could overcome someone like Connor. For most of his life, he was impervious to the stuff.
The youngest of a family with four brothers and a sister, he was often at the losing end of play. Sometimes he’d be the ball in a game his siblings called “Connor Football.”
“I could fall on my head, get up and laugh,” he recalled.
When he was 13, he broke his left leg as a Babe Ruth catcher — his leg got stuck in the backstop as he chased a wild pitch.
At 15, he broke his left foot sliding into what turned out to be a concrete second base. He even finished the game that time.
“We’re kind of a ‘tough-it-out’ kind of family,” said his mom, Rosemary Menneto.
Today, Connor’s CRPS sounds like hell manifested into the length of a single limb. At its worst, a drop of water would amplify the pain from powerful to unbearable. The breeze of a person walking past his bed created spasms of agony.
After all those years of competition, Connor’s greatest opponent became his own body.
CRPS, first discovered in the Civil War, is still barely understood. But it’s known to come about after multiple injuries to an extremity — such as the breaks in Connor’s leg.
Like the phantom sensations experienced by an amputee, the disease causes the brain to send out pain signals for trauma that doesn’t exist. And the pain is far worse than any trauma might be.
In Connor’s case, the pain was so great that morphine and even an epidural — anesthetic inserted directly into the spinal cord — had no effect.
“He’s been treated rather aggressively,” said Dr. Charles Argoff, director of the comprehensive pain program at Albany Medical Center. “He’s been rather difficult to control from the very beginning.”
In March, doctors put Connor in a five-day “drug coma,” using the anesthetic ketamine. The idea was to reset his brain — teach it that his limbs were fine.
Connor awoke without pain. But agony was back a week later.
“It’s a challenging syndrome to try to control,” Argoff said. “It’s almost as if the brain thinks pain is normal.”
And it got worse. On May 27, the disease spread to his arm.
Connor doesn’t do much these says. He spends most of his time sitting on the couch, sweatpants rolled up so the fabric doesn’t touch his left leg. He loves playing sports video games, but can’t because of his arm.
Now, he mostly watches car shows on TV or designs his own sports cars on a sheet of paper.
He takes 10 different medications a day, which he says keeps his pain at a “9,” one level below the top of the scale.
“The difference between a nine and a 10 is huge,” said Connor, who describes his worst days as “off the chart.”
“But nine is still…” he said, trailing off. “It’s hard to imagine living life at a nine. I don’t even want to think about it.”
In the afternoons, his mother takes him to therapy, swimming and putting weight on his leg. Doctors say the only way he can regain control of his body is by using the limbs that hurt so much — to force the brain to accept that they’re OK.
During a recent afternoon at Sunnyview Rehabilitation Hospital in Schenectady, he tossed rings onto cones, under the watchful eye of a therapist. He sweated freely despite the relative ease of his task.
But he was concentrating not on the pain, but the sport of it — raising his arm in victory when he landed one, muttering “aww” when he missed.
The family is in the midst of raising $26,000 to send him to the Cleveland Clinic Children’s Hospital, which has a three-week program for CRPS victims. Family insurance won’t pay for the treatment there.
The long-term prognosis differs, even there. Some patients can escape their pain, while others only experience a reduction. And a relapse is always possible, according to program director Gerard Banez.
“What we aim for is a return to normal activity despite pain,” he said. “If kids work hard here and continue the work at home, they will return either to normal activity or close to normal.”
Connor says he continues to be optimistic.
“I really relate this to sports,” he said. “Call it the ninth inning or the fourth quarter or the third period in wrestling. But it’s a time when you’re either going to win or lose.
“If you’re not doing everything to win,” he added, “you don’t deserve to win.”
Alan Wechsler can be reached at 454-5469 or by e-mail at firstname.lastname@example.org.
How to help
The Mennetos are raising money to pay for Connor’s treatment at the Cleveland Clinic Children’s Hospital. Checks can be sent to:
Connor Menneto Medical Fund Attention: Maureen Young c/o Trustco Bank 34 Wolf Road Albany NY 12205