Last summer, Djimon Hill and his family made a risky but potentially life-altering decision: The teen would undergo deep brain stimulation surgery to implant electrodes that might alleviate the movement disorder, dystonia, that accompanies his cerebral palsy.
A little more than one year later, they consider another question: Was it worth it?
Djimon, now 18 and in his senior year at a Denver-area high school, rolled into Children’s Hospital Colorado recently for the latest in his periodic visits to measure the effects of the treatment on his dystonia.
“Are you glad you had this done?” his therapist asked.
Djimon nodded.
But the affirmative answer — echoed by his mother and aunt, who share guardianship — has emerged gradually. While DBS has been used successfully to treat Parkinson’s disease, its impact on dystonia remains unproven. They all knew any results could take months to appear as his neurologist varied the settings on the electrodes in search of optimum effect.
Still, hope was a powerful influence on expectations, and the early post-operative progress — while initially quite promising — proved slow. Although even through mid-July Djimon’s overall improvement was described by his neurologist, Dr. Abbie Collins, as “mild,” his more recent advances since embarking on an intense physical therapy regimen helped the family overcome creeping doubts.
“Now,” says Venus Espinoza, his mother, “I’m really glad he chose to have it done. Before, I don’t think I felt like we would do it again. I’ve changed my mind on that. It’s a lot of little things that add up.”
Erica Kannely, Djimon’s aunt, admits that her early optimism waned. The uncertainty surrounding the fine-tuning of the DBS process, the incremental advances tempered by minor setbacks, demanded emotional adjustments along the way.
“They don’t make promises of miracles, and it wasn’t a miracle,” Kannely says. “When they started talking to us, they did tell us all the work was going to come after surgery, and Djimon had to be committed to working hard. Recently, I see more of the progress. I don’t think I have any regrets for him.”
Collins notes that it was the family’s request to begin intensive physical therapy and that its role in recovery has been part of a “knowledge gap” in previous research. Djimon’s experience — she now rates his improvement “moderate” — will inform future cases.
“He’s been encouraged by the positive changes he’s seen,” Collins says. “He told me he’s not excited about going to PT, it’s not something he looks forward to, but it reinforces the idea that the DBS is allowing him to work on things he was never able to do before.”
Djimon didn’t jump right into therapy after his surgeries, which included an operation three weeks after the brain surgery to implant pulse generators to power and program the electrodes. But once he began sessions three times a week after school let out last spring, the progress his family had hoped for began to show itself in more significant ways.
“I can do more,” Djimon says.
He can roll his body in both directions, which allows him to find more comfortable positions when he’s in bed. He can shift himself from the floor to a kneeling position with the help of a bench or couch. He can sit independently for at least 20 minutes, using the muscles in his torso to maintain his balance.
He can help more with transfers from his wheelchair by withstanding more pressure on his legs, which makes a huge difference for his caregivers as well. He can clutch objects for longer periods. He speaks more clearly — especially when he’s yelling at the TV during football games.
Djimon’s right arm, nicknamed Bob by family members because it seemed to move with a mind of its own, now appears more relaxed, which means that “overflow dystonia” doesn’t interfere as much with function of his left arm.
“I don’t think he’d be doing this good with just therapy, or with just DBS,” Espinoza says. “I think it’s a good combination. Djimon won’t ever admit he likes therapy, but he feels good about himself when he accomplishes things. Ask him if he wants a break, and he says, ‘No, let’s keep on going.’ ”
After wrestling with the decision of whether to have the DBS surgery last year, Djimon became the first to undergo the procedure in Children’s Deep Brain Stimulation Surgery Clinic, a partnership with the University of Colorado that merges clinical treatment with research.
Part of that research takes Djimon to Children’s Center for Gait and Movement Analysis — the “gait lab,” for short — where multiple infrared cameras use the same technology that powers computer-generated graphics in movies and video games to measure Djimon’s movements down to millimeters.
With tiny, reflective balls taped to his limbs and torso, Djimon is directed through a sequence of commands. On a nearby computer screen, he appears as a constellation — dots connected by colored lines — moving in a calibrated, three-dimensional environment. This is his fifth session in the lab, at roughly three-month intervals, to collect data on joint angles, velocity and acceleration of movements — even the most subtle changes in his performance over time.
“What we’ve seen is that if you look at it like you’re tracing the movement he’s making, it used to be a big range of overlapping circles,” Collins says. “As time has gotten further along and we’ve adjusted his programming, it’s become a tighter overlap of those circles — not in so much disarray. That tells us he’s having more accuracy and less dystonia.”
Djimon’s neurosurgeon, Dr. Aviva Abosch, has broached the idea of another surgery to fine-tune the placement of one electrode, as anesthesia employed for young dystonia patients like him can make the initial positioning less precise than with patients, like adults with Parkinson’s, who remain conscious during the procedure.
So far, Djimon has resisted the idea.
“This is ultimately the patient’s decision how he wants to approach it,” Abosch says. “There’s no guarantee moving it literally 2 millimeters will give a better result than he’s gotten without revising it.”
Collins would like to explore more stimulation parameters first. But if Djimon’s progress were to plateau, that discussion could be revisited later, she adds.
Meanwhile, Djimon continues to reach clinical and chronological milestones. He attended his high school prom — and wheelchair-danced so hard his hips were sore the next day. He has balanced himself, with his aunt’s help, upright in a swimming pool. He has grasped his mom’s hand and, while lying down, pulled himself upright. In therapy, he has taken side steps while steadying himself alongside a table.
With help from the Developmental Disabilities Resource Center and a GoFundMe effort, the family has acquired a van that makes transport easier. Espinoza completed a fast-track class to become a certified nursing assistant, which equips her not only to better care for Djimon, but also to earn extra money.
His recent advances through the therapy sessions have given her renewed optimism.
“We’re not done,” Espinoza says. “He’s not done.”
