Selective Dorsal Rhizotomy for Spastic Diplegia: One Patient’s Story

Four-year-old Landon is up to something.

You can see it in the look of anticipation and the dazzling, impish grin on his face.

He centers himself and then makes his move.

One, two, three, four.

The family’s video clip shows Landon taking four steps toward his mother, Lauren.

Four confident, independent, unassisted steps.

“Oh, my Gosh!”

The emotion, the surprise, the sheer delight in Lauren’s voice is evident.

She and Landon’s father, Brandon, had never seen their son do this before.

“We immediately started crying,” Lauren recalls. “It was one of the most joyful moments!”

Four steps are not a big deal for your average 4-year-old.

But Landon is not your average kid.

Miracle

He was arguably a miracle from the start. Born at 24 weeks gestation and weighing 1 pound, 12 ounces, Landon spent his first 137 days in a hospital neonatal intensive care unit (NICU) in Atlanta.

Diagnosed with chronic lung disease, hydrocephalus and other maladies related to prematurity, Landon was given a 30 percent chance of survival.

But Lauren and Brandon were dedicated to doing everything possible for their child.

With time, care and love, Landon beat those odds.

Around his first birthday, Landon received another challenging diagnosis — a doctor confirmed that Landon had spastic diplegia cerebral palsy, an abnormal muscle tightness in the lower limbs caused by an imbalance of signals in the central nervous system from the brain and through the spinal cord.

The family moved to Port Charlotte, Florida, in 2021 and soon began taking their son to Johns Hopkins All Children’s Hospital in St. Petersburg to continue to receive specialized care. Landon was using a walker, but his diplegia was severely limiting his ability to progress.

Various physical therapies had certainly helped their son, but could there be something more?

Lauren and Brandon had been hearing about a unique surgical procedure called selective dorsal rhizotomy (SDR). It involves cutting portions of the sensory nerves that supply sensation information from the legs to reduce overactive spinal reflexes.

Hassan Akbari, M.D., is a pediatric neurosurgeon with Johns Hopkins All Children’s who specializes in SDR surgery.

“A lot of times, kids who have cerebral palsy have a brain injury at birth,” Akbari says. “They lose the ability for their brain to inhibit the reflexes we normally have in our legs. So, the reflex ends up firing all the time. As a result, you get the spasticity and tightness in the legs.”

Lauren learned that Akbari had trained during his residency at Washington University in St. Louis with T.S. Park, M.D., the neurosurgeon who is world-renowned for SDR surgery for spasticity patients.

It seemed the stars were aligning. Landon would be in good hands. Still, it was a difficult decision.

“We struggled with it,” Lauren says. “Ultimately, we decided we wanted to fight for our son. We wanted to give Landon every chance to be able to walk.”

SDR Surgery

Surgery for Landon came on a warm day in May.

Landon is positioned on his stomach so that the surgeon can access his lower back, where the spinal cord sends nerve roots down to the leg muscles.

Akbari makes a small incision and temporarily removes a single piece of bone (single-level laminoplasty approach) to access the dorsal nerve roots, and hethen divides them into thirds.

“We look at those nerve roots, and we test them,” Akbari says. “We’re focused on the sensory information that’s coming in.”

To do that, Akbari employs something called intraoperative neuromonitoring. Electrodes are placed on Landon’s legs. A neurophysiologist is present in the operating room in front of a computer, which allows her to methodically send electronic signals through each nerve to elicit a response from the corresponding muscles.

Two out of three of the nerves with abnormal firing patterns are cut, with the surgeon taking care to preserve some function.

“Landon’s surgery went great,” Akbari says. “We were able to get a very good result.”

But the hard work for Landon was just beginning.

 

Relearning

The surgery was effective in reducing the excessive tone in Landon’s legs.

But there was a world of hard work ahead of this little boy.

James Chinarian, M.D., specializes in pediatric rehabilitation medicine at Johns Hopkins All Children’s.

“Physical therapy is essential after this surgery,” he says, “often more intensive than they had previously, and for many months, to help them regain strength and the ability to walk.”

For Landon’s parents, it was daunting to realize how much Landon would have to relearn.

“His legs were like a blank slate,” Lauren says. “He had to use muscles he had never used before. We had to go back to the fundamentals and build those muscles.”

After several weeks in the hospital, Landon would begin therapy sessions at Johns Hopkins All Children’s outpatient location in Fort Myers.

Progress was slow at first.

But gradually, there were more and more moments to celebrate. Landon could now sit cross-legged on the floor, something he couldn’t do before the surgery. He learned to step up and to kneel — small things for most of us, but achievements that were significant for Landon.

The most exciting change was to see how his gait had improved. Before surgery, Landon had learned to get around with his walker using his spasticity to propel him forward, often scissoring his legs or turning his feet inward when he walked. His left foot would drag underneath him as he depended on his upper body for movement.

But now, his gait looks completely different. He is upright, placing one foot in front of the other without scissoring, and he’s looking where he is stepping. 

The surgery doesn’t magically make spasticity or cerebral palsy disappear. But in many patients, it can bring them to a higher level of mobility than they had before the surgery — graduating from a wheelchair to a walker, for example, or from a walker to crutches, or from crutches to no devices at all.

“I’m so passionate about this surgery as something that can really make a huge difference in kids’ lives,” says Akbari, who works with Chinarian in the hospital’s Spasticity Clinic.

Landon’s confidence is improving along with his skills as he reaches new milestones — including the one he achieved recently while working with an independent therapist close to home — those precious first four steps. 

“The SDR surgery is the best decision we ever made,” Lauren says. “We are so grateful for it.”