For teen in pain, suffering is optional
By CATHLEEN F. CROWLEY, Staff writer
First published in print: Monday, May 3, 2010 BETHLEHEM — Connor Menneto felt pain that most of us can’t imagine. Diagnosed at 16 with a rare disease called complex regional pain syndrome, Connor’s left arm and leg burned in crushing pain.
“I kind of thought I would just lay on the couch for the rest of my life,” said Connor, who is now 18.
Little is known about CRPS. It typically appears after a trauma such as a broken bone. It’s as if someone turned on the switch that controls nerve pain and forgot to turn it off. The affected limbs may turn red or purple because the brain redirects blood to prevent blood loss as if it’s a real trauma.
Connor had broken his foot sliding into second base, which was probably the trigger for his CRPS. On a scale of 1 to 10, Connor said the pain of breaking the foot was 4 but the CRPS was a 10 or worse.
Doctors in Albany tried everything: painkillers, nerve blocks, spinal cord stimulators, epidural catheters and even a medically induced coma to reset his brain. After the coma, Connor felt better for a week but the pain returned and spread from his leg to his arm.
Connor settled into life on the couch. Home tutoring didn’t work because he couldn’t concentrate.
He wore shorts and a T-shirt and no sock or shoes. He held his arm straight, away from his body to prevent anything from touching it. Even air set off waves of pain.
“He could tell if someone opened a door or window anywhere in the house,” Rosemary Menneto said.
The baseball community and family members raised money to send Connor to the Pediatric Pain Rehabilitation Program at the Cleveland Clinic Children’s Hospital. In June, the Mennetos arrived holding a $25,000 check to pay for three weeks of therapy.
“Most kids come in with the approach that all things will be better when the pain goes away,” said Gerard Banez, the psychologist who heads the pediatric pain program.
For kids like Connor, it doesn’t work that way, Banez said. Their pain may never go away, so they need to learn to live through the pain. The clinic teaches them through hours of physical therapy and psychological counseling.
Banez’s motto is “Pain is pain. Suffering is optional.”
It’s not easy.
During the first two weeks, patients live at the clinic and are in therapy from 8 a.m. to 5 p.m. They have an hour for dinner and then continue treatment with a couple hours of recreational therapy.
Connor was hopeful but scared.
He was pale, slouched over and droopy-eyed with pain. The therapists took away his cane and ordered him to wear shoes and socks, and then put him through hours of painful physical therapy.
He unloaded on his mom when she visited him that first night.
“He kept saying ‘They don’t know what they are doing, it’s not going to work, they don’t know how much pain it is,’ ” she said.
Therapists forced Connor to bend his elbow, which was locked straight from disuse. They wrapped it to hold it into a bent position.
“You just think ‘Wow, these people are putting me through a ton more pain. What benefit can that be?’ It was horrible,” he said.
He saw some progress, but more disappointment and pain. Banez pulled Connor aside and told him he had to commit himself or leave.
Connor’s dad, John Menneto, who owns J.M. Rose Construction, wasn’t able to stay in Cleveland, but he called often. On one of those calls, he lit into Connor.
“Quit screwing around,” he told him, as Banez recalled. “You need to work with these people and we don’t expect anything less.”
Connor’s case was one of the worst the pain clinic had seen in three years of treating children with CRPS, Banez said. The level of pain, the fact that two limbs were affected and the atrophy made Connor’s situation tough.
The clinic doesn’t allow patients to talk about pain. Instead, they talk about what they can do today that they couldn’t do yesterday.
The philosophy began to stick. Connor started to see improvements. The therapist told his mom that his personality was changing.
“No,” she said. “That is the real Connor coming out.”
He stayed seven weeks instead of three at a cost of $60,000 but he left as a new person. Insurance paid a portion of the cost.
Back home, he continued his therapy and regained full movement of his arms, fingers and leg, surpassing the expectations of his therapists. He is playing baseball and basketball with his friends, he returned to school and is physically back to normal, he said.
Connor’s pain is about an 8 on the scale of 1 to 10.
“I learned how to live with the pain rather than live around it,” he said. “I do the things I want to do and not make decisions based on the fact that it’s going to hurt.”
On Friday, Connor received a Courage Award from the Cleveland Clinic at a black-tie fundraiser attended by nearly 1,000 people.
“He embraced and embodied what we try to impart to the kids here,” Banez said.
Some days, Connor wakes up and his mom can see his arm is purple, but he trundles off to school. They don’t talk about the pain scale anymore.
“The biggest thing about pain is your mind-set toward it,” Connor said. “If you let it encompass your mind and everything you think about is pain, then you’ll end up focusing on it and it will always be worse that it could be.”
The color is back in his cheeks, his gray-green eyes don’t droop anymore and dark curls tumble over his now peaceful face.
Sometimes, his parents just stare at him in disbelief.
“I am thrilled to hear him go up and down the stairs, pounding. To hear him laugh with his brothers, we hadn’t heard that in so long,” Rosemary Menneto said. “It could make me cry just listening to him run through the house.”
Cathleen F. Crowley can be reached at 454-5348 or by e-mail at firstname.lastname@example.org.