CAMPTON HILLS – Tanner Saunders has seven baseball trophies in his bedroom in recognition of his athletic ability, including being considered the best outfielder in his league.
Aside from sports memorabilia, his wall also contains an oversized flame-orange ribbon, the color of his pain.
The 15-year-old freshman at St. Charles North High School suffers from complex regional pain syndrome – also known as reflex sympathetic dystrophy – a condition in which his nerves send out a constant sensation of burning, stabbing pain.
Tanner cannot play sports anymore. He was tutored at home for two years because the pain was so great, he could not go to school.
“I’m in pain every day,” said Tanner, smiling. “The pain is real. From what you see on the outside – the smile is a mask. Everyone who has [this] is in pain every day unless they are in remission.”
Tanner is the international spokesman for children living with pain, talking to newly diagnosed children and teens referred to him through the disease’s support groups, websites and on Facebook.
Tanner said he has counseled too many children, ages 9 to 18, to count.
He tries to soften the message to them; their shared condition is not curable, and they have to look to various strategies to control pain.
“It can just ruin your life,” Tanner said. “I would never wish this on my worst enemy.”
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Sports were a big part of her son’s life, said Tanner’s mother, Jackie Walsh. He was running from one practice to another, one game to another. Then he branched out from baseball to include soccer. He was a boy in perpetual motion, praised for his athletic gifts.
But it came to an end April 19, 2010, after a baseball practice when he was 11.
“He was filling in for the catcher, and he was hit by a foul-tipped ball just above the cleat and just below the pad,” Walsh said. “It was just a little open spot. It was not even a hard ball. It did not even leave a bruise.”
Nobody thought anything of it until Tanner complained it hurt.
“The next day, it hurt to have his shoe on,” said Walsh, a sense of incredulity in her voice. “The pain just kept getting worse, and nobody could tell us what it was. His dad took him to the emergency room, but nothing was broken.”
Tanner went through six doctors before getting a diagnosis from a pain clinic doctor, who referred him to a pediatric neurologist.
The doctor who made progress in quelling Tanner’s pain was Dr. Timothy Lubenow at Rush University Medical Center in Chicago.
Lubenow performed 30 sympathetic nerve blocks in Tanner’s spine to calm the nerves sending the endless pain messages, a spinal cord stimulator that resets the nerves and seven ketamine infusions. Ketamine is a cat tranquilizer effective in treating acute pain.
“His nerves are misfiring hundreds of thousands of times, sending messages that he is in horrible pain,” Walsh said. “There is the McGill pain scale, which is what doctors use to rate pain. There is nothing higher than RSD – not even childbirth.”
Through Lubenow’s work, Tanner finally could put a shoe on his left foot, and in the summer of 2011, his pain was manageable.
“From Memorial Day to Labor Day, I was doing everything,” Tanner said. “Playing football, baseball, swimming, roughhousing – being a kid again for the first time in a year.”
Gradually, the pain came back.
Tanner is hyper-aware of the effect his condition had on his mother, stepfather, stepbrother and little sister.
“It’s debilitating,” Walsh said. “It affects the whole family. ... All you can do is live today today, and worry about tomorrow tomorrow. There is no end in sight – yet.”
In addition to the emotional anguish over her son’s pain are the out-of-pocket costs of $20,000 to $40,000 in a year and near constant battles with the family’s insurance carrier.
At one point when the company balked at paying for a treatment Tanner needed, Walsh said, she threatened them with Christmastime coverage on the news. Within minutes, she said, insurance officials began approving Tanner’s treatment.