First Spinal Cord Stimulation Implant Relieves Isabella of Severe Chronic Nerve Pain

As a teen girl nearing her first year of high school, there were many ways Isabella would have chosen to spend her free time in 2021. Instead, her routine was shaken up by the sudden onset of unfamiliar pain in her stomach, and her schedule began to revolve around doctor’s appointments – all part of a journey to figure out exactly what she was experiencing and why.

While this wasn’t Isabella’s first time under the care of Lurie Children’s physicians, it was the first time in many years. As a 3-year-old girl, Isabella was diagnosed with acute lymphocytic leukemia (ALL), and while difficult to hear, Isabella had a reassuring prognosis. Thankfully, she went into remission quickly and by the time chemotherapy officially ended a few years later, she was feeling good, with very little side effects as a result.

Exploring the possibilities

After being in remission for several years, Isabella felt confused by the sudden onset of pain she felt. Given the complaint of pain in her stomach, initially her primary care pediatrician sent her to Gastroenterology where both gall stones and kidney stones were discovered. When procedures to remove these things in her gallbladder and kidneys didn’t relieve her pain, she transitioned to the care of doctors and other providers in the Chronic Pain Management team.

“By this time, they figured out that the pain was actually between her ribs versus her stomach,” Isabella’s mom, Pearl, said.

As the pain got worse, Chronic Pain Management suspected the issue was Isabella’s nerves, so she started on nerve pain medication that temporarily improved her symptoms. A few months later, she experienced another flare up with the same intensity as before. The pain had spread to both ribcages, her abdomen, spine, throat and neck, making it impossible to go to school.

“Everything was just hurting all the time,” Pearl said. “She [rated her pain at] about a 7 out of 10, every day, all day. If she moved too much, was sick, or had her monthly periods, it would flare up even more.”

Eventually Isabella was referred to Lurie Children’s Division of Neurology. Clinicians diagnosed her with autonomic nerve dysregulation and suspected this is what caused her kidney stones, but still wasn’t to blame for the constant pain across her body.

“It was hard,” Pearl said. “For as much pain as I knew she was in, she handled it really well, but eventually [the chronic pain] started to affect her personality, and she missed nearly all of her eighth-grade year.”

Long-awaited questions, answered

Things finally started to click with the involvement of Pediatric Neurosurgery. It was Neurosurgeon Dr. Jeffrey Raskin who Pearl says immediately knew how to help Isabella and ultimately determined that a spinal compression fracture was causing her severe chronic multi-site pain.

Dr. Raskin’s recommended course of action was a spinal cord stimulator (SCS), which is an implanted device that sends low levels of electricity directly into the spinal cord to relieve pain. Having co-authored the second largest study of this procedure in children that ultimately confirmed its efficacy for neuropathic pain syndromes, Dr. Raskin was confident SCS would provide Isabella the much-needed relief she was looking for.

“Isabella had a typical story for my spinal cord stimulation patients,” Dr. Raskin said. “Her chronic mixed pain was caused by multiple issues including her history of chemotherapy, her thoracic compression fracture, and nerve impingement. What struck me was the pain component that had come from a specific nerve distribution – her intercostal nerves between her ribs – and I know spinal cord stimulation is an effective treatment for that kind of pain.”

With the excitement of this possibility also came worry from Isabella who had spent so much time away from her “normal” life that re-acclimating sounded like another challenge to overcome.

“I did feel hopeful, but at the same time it was a little scary,” Isabella said. “Because I missed so much of school and social life, I was thinking about how I was going to fit back in, deal with this device and just manage to keep up.”

Pearls says their family was prepared for different outcomes. “Even if it could reduce her pain by half, we were okay with that,” she said. And so, they moved forward with hope.

Isabella went ahead with a successful procedure for a temporary SCS trial in February, which was followed by her permanent implant surgery a few days later. She was the first patient to undergo this series of procedures at Lurie Children’s.

There are few pediatric neurosurgeons in the world who specialize in functional neurosurgery with special interest in the neurosurgical management of chronic pain. Luckily, Lurie Children’s Dr. Raskin is passionate about the role that neurosurgeons can have in a multidisciplinary pediatric pain program. When the diagnosis is one that can be addressed effectively with neurosurgical options, surgical procedures such as spinal cord stimulator implantation can have a huge positive impact on people's lives.

“SCS has been FDA-approved in adults since 1989, and is the most common stimulator implanted in humans,” Dr. Raskin said. “Although technically off-label in people under 18 years old, we know that it is equally as effective in children for many conditions. The number of pediatric and adolescent patients who will benefit from SCS far exceeds the number referred for evaluation.”

A life-changing outcome

Implantation of a spinal cord stimulator is an outpatient procedure, so Isabella went home the same day. Pearl says Isabella's change in outlook and shift in temperament was noticeable in the best way. The SCS immediately turned her severe pain around and after a few weeks of recovery, she was feeling free to be her teenage self again. Through a handheld controller, Isabella can manage the level of electricity stimulation to her spine and adjust based on how she’s feeling week to week. Each “charge” lasts about 10 days and Isabella now describes her pain as minimal – a 1 out of 10. She’s also completely transitioned off her previous medications.

Isabella will start freshman year of high school next month and is looking forward to getting back on track and involved with activities now that her once-mysterious chronic pain is under control. Whether it’s culinary club, arts and crafts or gaming, she is more than ready to make up for lost time.