The cure: Family finds answer for debilitating pain
Teen suffering from rare condition gets second chance at childhood
When James arrived home from work one evening, he found his little boy, Nickolas anxiously waiting for him.
James saw Nickolas with a football. He’d waited a long time to throw and catch a football once again with his dad.
It wasn’t that long ago that Nickolas was in tears from the sharp, stabbing feeling in his abdomen. The nerve block procedure he’d just awoken from did little to ease his pain. Groggy from anesthesia, he didn't know what he was saying to Cook Children's pain management physician, Artee Gandhi, M.D. He only knew that the years he'd spent laying on the couch because it hurt too much to move had to end.
"He kept saying 'please help me, you're all I have Dr. Gandhi, you have to help me,'" said Julie McCanless, Nickolas' mother.
The pain in the upper right quadrant of Nickolas' abdomen began suddenly in 2011, when he was just 10 years old. Though he was an active child who enjoyed playing football, there was no injury or incident the family could point to as the trigger for his pain. His parents began searching for someone who could provide a diagnosis and also relief. Despite seeing physicians in Texas, Oklahoma and even Minnesota, no one could tell the North Richland Hills family what was plaguing their son.
"It was out of control. He couldn't play sports anymore. It affected his appetite, his mood, nothing seemed to help," said Julie.
The family tried everything they could think of to ease the pain. Essential oils, massage therapy, acupuncture, they even visited a chiropractor, but none could offer Nickolas reprieve. Out of ideas, they turned to a Dallas pain clinic.
"They put him on every kind of pain medication you could think of from hydrocodone to ibuprofen, Tylenol, all the way to oxycodone and oxycontin," said Julie.
She says the drugs gave him some comfort, but left Nickolas with zero quality of life. He was often too drowsy from the medication to interact with family or friends. Attending school was also made difficult. The McCanless family spent nine months trying to find a prescription that would help without the negative side effects, all while hoping someone would one day give them a diagnosis. Then they turned to the Pain Management program at Cook Children's, one of only 35 pediatric pain clinics in the United States.
Dr. Gandhi helped launch the Pain Management program seven years ago. At the time, she was the only pain management physician at Cook Children’s and would visit patients in their rooms while carrying charts in a roller bag. The program has since grown into a multidisciplinary department complete with two board-certified physicians, clinical, physical and massage therapists, nurses and a biofeedback therapist. Instead of treating pain solely with medication, Dr. Gandhi and her team aim to help patients manage it with relaxation techniques, diet, exercise, lifestyle modifications and sleep.
In Nickolas’ case, Dr. Gandhi used many of these treatments as well as nerve block injections, which interrupt how pain signals are sent to the brain. He’d undergone these injections at other hospitals, and they usually offered temporary relief.
“We decided to try the nerve block injections, but every time it would wear off the pain would return, ” said Dr. Gandhi.
She started to think that Nickolas might have a rare condition known as abdominal cutaneous nerve entrapment syndrome (ACNES). It occurs when a nerve becomes ‘entrapped’ in the abdominal wall. Because it’s not common, ACNES is often overlooked and misdiagnosed for a gastrointestinal issue. Dr. Gandhi knew she would have to think outside of the box in treating Nickolas if she was going to keep her promise to him.
“She said she wasn’t going to give up and she didn’t. No matter how many times the pain blocks failed, she would try to find something else,” said Nickolas.
“I told Dr. Hamner what I thought Nickolas had and that a neurectomy may be helpful,” said Dr. Gandhi.
A neurectomy is performed by removing all or part of a nerve. Dr. Gandhi thought that by removing the nerve she believed was ‘entrapped’ that his pain could be stopped. Dr. Hamner agreed to meet Nickolas to see if surgery was a feasible avenue to explore.
“He did some more investigation as well as an exam and decided to do the surgery, and low and behold, it worked,” said Dr. Gandhi.
Nickolas underwent surgery in April. By mid-May, he was doing things he didn’t think he’d ever do again.
“I asked Nickolas what he’d want to do if the surgery worked. He said ‘throw a football,” said Julie.
Three weeks after surgery, Nickolas bought a football. When his dad arrived home from work that evening, his sister told their father that Nickolas had a surprise for him.
“He put his stuff down and I came running out. I threw him the football and he gave me a big hug. We both started crying,” said Nickolas.
He’s now well on his way to being a normal kid again, running, throwing and hanging out with his friends. His mother says she couldn’t be more thankful.
“I know there are hundreds of children out there going through what my son went through,” Julie said. “The only thing I can tell them is don’t give up.”
To make an appointment with Pain Management, call 682-885-PAIN (7246) phone. Click here to learn more about the program.
Pain Management at Cook Children's
Cook Children's Pain Management program cares for infants, children and adolescents with chronic and acute pain. Cook Children's is one of a few children's hospitals in the U.S. providing a comprehensive pediatric pain management program.
The program's goal is to improve the quality of life for our patients by giving them the tools to cope with and overcome pain. Some of the therapy options are medications, interventional pain procedures, medical acupuncture, relaxation therapy, guided imagery, biofeedback, hypnosis and cognitive behavioral therapy. The team also teaches patients and families how to manage pain through exercise, diet, lifestyle modifications, and sleep hygiene.
The team includes two board certified anesthesiologists trained in pain management, a licensed clinical social worker specializing in psychophysiology, a physical therapist, a clinic nurse coordinator, and referral to a dedicated clinical therapist. Click here to learn more.