Video by Hunter Mitchell, Noah Fromson, Michigan Medicine

A five-year-old Michigan boy is moving better than ever – toward the goal of walking unassisted – nearly nine months after a complex spinal nerve root surgery that involves eliminating excessive reflexes.

In April of 2022, Charlie Boike underwent a selective dorsal rhizotomy. Wires connected to his muscles; electricity flowed from nerves through the spinal cord. The surgeon then severed portions of the nerves, the culprits most contributing to the tightness, or spasticity, in Charlie’s legs.

The decision to pursue a major surgery didn’t come immediately for his mother, Lindsay Boike. At four years old, prior to the surgery, Charlie had come into his own. He danced all the time and became engrossed in video games. Once outside, his mother could not get him back in.

And everything Charlie Boike did, he would rather be doing it alongside his brother, Vincent.

“Charlie’s love for his brother is unconditional; Vincent is like his hero,” Lindsay Boike said. “He always says, ‘I just want to be like my brother.’”

But that wasn’t all he would tell her. “I want to walk like my brother,” he said.

Different therapies

When Charlie Boike was six months old, he did not meet the same developmental milestones that his mother, a registered nurse, knew to expect. He wasn’t using his right hand, and his crawling looked more like scooting than traditional all-fours.

“I know you are not supposed to match your child’s development against anybody else’s child,” Lindsay Boike said. “But, at the same time, you just kind of have a gut feeling that something’s not right.”

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Doctors diagnosed Charlie with spastic cerebral palsy, a neurological condition that affects movement and muscle development. He soon began physical therapy at University of Michigan Health and achieved small bouts of progress. However, he would eventually hit a wall with each stint – his muscles tightening and mobility plateauing.

They also tried Botox injections; another method used to reduce spasticity. Though the injections worked, the relief was temporary.

Lindsay began looking for another option with her son’s doctor of several years, Alecia Daunter, M.D., a physiatrist at U-M Health C.S. Mott Children’s Hospital.

“Charlie was already showing changes in his muscle tone and range of motion, so I wanted to change paths to something that could offer a longer impact on his tone and really help him for a bigger part of his lifespan,” said Daunter, who is an assistant professor of physical medicine and rehabilitation at U-M Medical School.

Decision to get a dorsal rhizotomy

At first, the thought scared Lindsay Boike.

Spasticity, a tightness of the muscles, in children such as Charlie is caused in part by overactive responses by the spinal cord to sensory input coming from the legs. Some sensory nerve roots are linked to more problematic spinal reflex circuits than others. These interrupt voluntary movement of the legs.

During a selective dorsal rhizotomy, which is generally performed on children aged three to 10 years old, a neurosurgeon will find the nerves roots that supply movement and sensation to the legs. Then, along with the physiatrist, they use electricity to stimulate the sensory fibers and monitor the response in the muscles. The sensory rootlets on the most problematic pathways are then sacrificed, being sure to keep enough fibers to preserve normal feeling in the legs.

“When you hear that we’re considering spine surgery on a pre-school or early school-aged child, it can be overwhelming, and we don’t take that decision lightly,” Daunter said. “Any surgery has its risk, especially one that’s near the spinal cord. So, it’s really important to think about going to a center that has a lot of experience doing these procedures. It’s something we’ve offered at U-M for decades.”

The procedure has been shown to provide an effective decrease in muscle spasticity long term. It is not however, a “cure” for cerebral palsy.

Each year, 10,000 babies born in the U.S. will be diagnosed with cerebral palsy but not all will be candidates for dorsal rhizotomy. Beyond the strict rehabilitation requirements for maximizing the surgery’s benefits, Daunter says, this gap exists because the procedure is only appropriate for certain types of cerebral palsy. Nor is the procedure an instant-fix, Daunter told Lindsay Boike. The recovery requires physical therapy multiple days a week to help the child achieve their best level of functioning.

“I took the resources Dr. Daunter gave me and talked with my family because we all needed to be prepared for the journey of recovery,” Lindsay Boike said. “We all came to the consensus that we had to try. If it gave Charlie even slightly more mobility than he had at the time, it would absolutely be worth it.”

Charlie Boike underwent selective dorsal rhizotomy on April 22, with pediatric neurosurgeon Hugh J. L. Garton, M.D., leading the procedure alongside Daunter.

“When I met Charlie and his family, it was obvious how much he wanted to be walk and keep up with his brother,” Garton said. “I knew the therapists would love working with him.”

Charlie’s recovery

In the days after Charlie’s procedure, Lindsay Boike could tell something was different about Charlie’s body.

“His right hand came back quite a bit after surgery, so he’s been doing a lot of the occupational therapy and physical therapy with both hands now, despite being dominant with his left hand,” Lindsay Boike said. “His legs are becoming stronger every day. He is able to extend his knees and plant his feet better with the help of therapy.”

SEE ALSO: Cerebral palsy doesn't cause death in adults, so why is it still listed as an underlying cause? (uofmhealth.org)

The response in Charlie’s arms is a benefit seen in some patients, Garton says, which is thought to be due to a reduction in activity of the neural network up and down the spinal cord.

Nearly two weeks after the procedure, Charlie Boike left the hospital for home in Jackson, Mich. He started attending physical and occupational therapy three times a week, with grandparents pitching in to accommodate the demanding schedule.

While his energy may wane, Lindsay Boike says, Charlie can stand straighter, and his gait is more flexible than ever.

“Charlie was probably at about 35 to 40% of his potential when he had surgery,” she said. “Now that the surgery is over with and we're doing therapy, I want to say that he's at about 75% maybe close to 80. He can't quite walk on his own yet, but that's learning his steps and his gait and his balance. We still have a lot of that to work with and have to remind him the surgery is not an overnight fix. But we’re so excited to see him progress.”

Seeing patients and their family members after this surgery is a joy, Daunter says.

“So often, I’ll check on them at the hospital and parents will say, ‘Wow, I’ve never seen their legs move like that,’” she said. “When they come back for their follow up visits, the kids always have so much progress to show me. It’s such a rewarding part of my career to be able to get to know children when they are very young and help find ways for them to reach their goals. I can’t wait to see what Charlie will learn next.”

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