Complex Regional Pain Syndrome: Brielle's Story
Patient Story Highlights
- Brielle, a 15-year-old competitive swimmer, experiences chronic pain after a seemingly unremarkable fall.
- Despite multiple treatments, her pain worsens and impacts her daily life, forcing her to stop swimming.
- Brielle is diagnosed with Complex Regional Pain Syndrome (CRPS) at Johns Hopkins All Children's Hospital.
- Undergoing an intensive one-week in-patient program, Brielle makes significant progress through a holistic approach.
- Brielle's pain vanishes after the treatment, and she returns to swimming and her normal life.
- Inspired by her journey, Brielle plans to become a pediatric pain management specialist in the future.
Fifteen-year-old Brielle moves gracefully through the water, fast and sleek.
A competitive swimmer since the age of 6, the pool is like her second home.
She loves the challenging butterfly stroke best of all. The timing, the coordination and the sheer muscle power involved require everything she has to give.
But there was a time when everything she had to give was not enough.
Brielle would experience a two-year journey with pain that dramatically altered her life, one that would ultimately lead her more than a thousand miles from home to Johns Hopkins All Children’s Hospital for answers.
The event that precipitated the pain seemed unremarkable at the time.
In December of 2019, Brielle fell down some stairs while on a ski vacation, landing on her elbow.
“The pain wasn’t really that bad at first, but it felt like something was wrong,” Brielle says.
A trip to an urgent care clinic revealed nothing was broken. She was told it would heal in a week. But it didn’t. Not only did the pain persist, but she was unable to straighten her arm. It seemed permanently bent at a 90-degree angle, impacting her daily functioning.
Doctors recommended a cast. When that didn’t prove effective, the family resorted to a surgical solution. But after the surgery, Brielle’s pain only got worse. Much worse.
“She couldn’t touch it, she couldn’t wear long-sleeved shirts or put water on it … she couldn’t do anything,” her dad, Brian, says.
Brielle had stopped swimming. The anxiety and stress from the chronic condition were impacting her greatly.
“There was a time where she was just on the couch, unable to function,” her mom, Brandi, says. “She couldn’t walk to the bathroom; she didn’t have any balance. She felt sick. It pretty much stopped our lives.”
With great effort, Brielle was able to participate in a nine-week outpatient pain clinic at a prominent children’s hospital in Massachusetts. She pushed through the pain during therapies and regained some function during that time, but it would not ultimately cure her problem.
By March of last year, like a bad dream, the pain and dysfunction had fully returned.
By this time, Brielle and her family had tried a cast, surgery, a lengthy outpatient treatment course, acupuncture, shockwave therapy and countless other attempts at helping Brielle to get her life back.
“It’s very interesting to me,” Brian says, “that nowhere along the line did anyone want to try to actually address the source of the pain.”
Complex Regional Pain Syndrome
Complex regional pain syndrome (CRPS) is a condition of chronic, excessive pain in one of the extremities (arm, leg, hand, foot), most often triggered by a trauma or injury. is a condition of chronic, excessive pain in one of the extremities (arm, leg, hand, foot), most often triggered by a trauma or injury.
Experts don’t fully understand this mysterious condition, but it’s believed to be a type of dysfunction along the nerve pathway, from the periphery to the spine to the brain.
“The nerves just keep firing abnormally, sending pain messages to the brain,” pediatric anesthesiologist Giovanni Cucchiaro, M.D., says. Cucchiaro is the director of Pain Services in the Department of Anesthesia at Johns Hopkins All Children’s Hospital in St. Petersburg, Florida.
In the family’s search for answers, Brielle came across an article about a young patient with a similar story who got relief from a unique in-patient pain program led by Cucchiaro and a team of highly skilled experts.
St. Petersburg was a long way from the family’s Massachusetts home. But they couldn’t afford to give up. They needed answers.
Inpatient Pain Care
In October, Brielle and her dad took a flight to St. Petersburg for an evaluation by the hospital’s Chronic Pain Management team.
“When I met with them, it was the first time I had really felt listened to and understood,” Brielle says. “Dr. Cucchiaro felt confident he could fix me.”
Cucchiaro confirmed the diagnosis of CRPS and recommended the intensive one-week in-patient program for Brielle.
The program takes a holistic and individualized approach to CRPS, with board-certified physicians, physical and occupational therapists, and a pediatric psychologist all working together on behalf of the patient.
The family did not hesitate. On Nov. 15, Brielle was admitted to Johns Hopkins All Children’s Hospital.
Brielle’s Busy Week
While pain medications do not tend to work for kids with CRPS, physical and occupational therapies do. But pain can block progress. Cucchiaro’s approach is to block the pain instead — by placing a catheter into the limb to deliver a basic local anesthetic when the patient begins treatment.
“It’s hard to make progress if you’re hurting, so we numb the extremity, allowing the patient to do the therapies that we know work,” Cucchiaro says.
With the pain messages shut off, Brielle was freed up to truly make progress during her in-patient stay.
“I could straighten my arm for the first time in … I don’t know how long,” Brielle says.
As part of her therapies, Brielle was receiving psychological support as well, a core aspect of the program.
Pediatric psychologist William Frye, Ph.D., helped Brielle to address the fear and anxiety that come with chronic pain and worked with her on coping strategies.
“It’s about helping them to understand that they actually do have some control over pain,” Frye says.
Brielle was amazed with her progress. By day three, she was doing push-ups with the arm that had been the source of so much agony before.
Toward the end of the week — an ultimate marker of success when the local anesthetic was shut off and the catheter was removed.
“I could feel everything — and it did not hurt,” Brielle says. “I was like, ‘wow!’ There was no pain at all.”
Cucchiaro theorizes that the numbing agent disrupts the pain messages in a way that allows a sort of “re-set.”
Then when it’s time to remove the catheter, the nerve fibers can go back to firing normally.
Brian remembers the emotional phone call to his wife from the hospital when the catheter was removed, and the pain was gone.
“They really fixed her!” Brian said to his wife.
“We just sat there on the phone. Neither one of us spoke,” Brandi says. “We were just crying.”
Brielle wasted no time making the most of her fully functioning arm.
The Monday after she returned home, she swam her heart out in her first high school swim tryouts. She made the team. She swam in every meet. And since then, she has been fully participating in the kind of life that any 15-year-old should enjoy.
“If just one family sees this story, if one child who’s going through this can get this help, then we’ve accomplished our goal,” Brian says.
This honors student has an eye to the future. Propelled by her personal journey, Brielle wants to become a doctor one day, specializing in pediatric pain management.
She wants to help other kids find solutions to their pain, just like she did.
But until then, she will stay busy — perfecting her very impressive butterfly stroke.