Ortho, pain teams work to get patient moving again

By Maureen Gilmer, Riley Children’s Health senior writer, mgilmer1@iuhealth.org

For years, Lauren Barnett has struggled to live a normal life. She was in a car accident as a toddler that left her with facial injuries and a skull fracture. She’s been a urology patient since shortly after that.

From there, she was diagnosed with scoliosis (a curving of the spine) as a teen, suffered severe back pain that led to her relying on a wheelchair to move and underwent a decompression surgery to relieve pressure on her spinal cord.

Today, thanks to surgery at Riley Hospital for Children and ongoing treatment in Riley’s Pain Management Clinic, Lauren is walking independently, learning to drive, and even holding a full-time job at a pizza restaurant, something she and her mom, Megan Diaz, weren’t sure would ever happen.

“We thought she was going to be on disability,” Diaz said, adding that her daughter’s Riley care team, which includes Dr. Aki Puryear and nurse Emily Hornback from orthopedics, and Dr. James Tolley from the pain clinic, have been “godsends” through this most recent part of her journey.

“She was in a wheelchair when we met Dr. P. She had very little mobility and was in excruciating pain all the time,” Diaz said.

Dr. Tolley diagnosed Lauren with Complex Regional Pain Syndrome, a chronic pain condition often described as burning or throbbing that can be difficult to identify because it doesn’t show up as an injury on an X-ray or MRI.

“It’s neuropathic pain; it originates in the nerves themselves,” said the physician, who trained as an anesthesiologist. “You can have pain from a broken arm or a muscle spasm and find a reason for the pain, but sometimes you can have pain that originates in the nerves, and one cause of that pain is CRPS.”

It is often intense pain that can occur from a simple touch, he said, likening it to the feeling of being stabbed.

The goal for Lauren was to treat the pain through a combination of non-addictive medications and physical therapy to maintain her range of motion so she could get back on her feet before Dr. Puryear felt comfortable doing surgery on her back.

In April 2023, the orthopedic surgeon operated on Lauren, performing a spinal fusion and laminectomy, a procedure that involves removing part of the vertebral bone to relieve pressure on the spinal cord or nerves, then stabilizing the spine by fusing adjacent vertebrae together.

The first night was rough, mom and daughter acknowledged, but Lauren was determined to be up, dressed and moving with help from physical therapy the next day.

“She’s a fighter,” Diaz said.

Six months later, she was able to show Dr. Puryear how well she was moving and that she had been able to walk at her high school graduation to collect her diploma.

“Dr. P tells her every time he sees her how proud he is of her,” Diaz said. “He was the first doctor who made her feel heard.”

“He was the first person who really listened and believed something was going on,” Lauren, now 20, added. “I love Dr. P. We fight sometimes, but he’s my best friend.”

And thanks to the Pain Management Clinic, she got an answer as to why she was in so much pain.

“With complex regional pain syndrome, they can’t see it on a test, they have to go by symptoms. They believed me when I told them I had those symptoms and that it wasn’t coming from my head.”

While she still suffers some pain, primarily in her middle back and hips, it’s controlled, she said.

“The pain went from over a 10 to a 2 or 3,” Lauren said, thrilled that she can take long walks on trails near her Mooresville home again and play with her cats when she’s not working.

“We try to mitigate the pain so people can participate in physical therapy and maintain activity,” Dr. Tolley said. “Ongoing activity allows the nerves to return to normal function.”

Diaz is grateful to both physicians and the Riley team for listening to her daughter over the years.

“You never know how much pain another person is in because you’re not in their skin,” she said. “They made sure she didn’t feel alone, and they worked very well together.”

Dr. Tolley said Lauren deserves much of the credit for her progress.

“She has exhibited good determination. It can be helpful for patients just to understand what they’re dealing with and knowing what they have to do to get better, knowing that physical therapy is going to hurt but they have to go through this to improve.”