Ryan’s Hope: How DBS Surgery Changed His Life
The story of Cook Children’s 100th Deep Brain Stimulation patient
Ryan Conder warms up his right arm and fires off a pitch. Whether it’s a strike or not, doesn’t matter. The miracle’s already occurred.
Ryan, 10 years old, wondered if he would ever get the chance to play the game he loves so much after a rare neurological movement disorder call dystonia changed his young life. He went from being a rough and tumble multi-sport athlete to using a wheelchair to get from class to class in his elementary school.
Ryan became the 100th patient at Cook Children’s to receive deep brain stimulation(DBS) surgery on Monday, Nov. 30, 2015. The surgery was performed by John Honeycutt, M.D., Cook Children’s medical director of Neurosurgery.
Nearly two year later, it’s hard to imagine this little boy once struggled to walk or hold a pencil in his right hand. The successful DBS surgery has brought him back to the normal the Conder family knew before DBS robbed him of his childhood for more than a year.
“I’m the happiest mom in the whole wide world,” Kayla, Ryan’s mom, said. “When he first got diagnosed we were shocked and it was really hard because we had to have help with almost everything. But now he doesn’t need help or want help. I’m just so excited and really amazed. I’m very thankful because he’s like he was before.”
Last year as Ryan his family wait out in the lobby for their appointment, Dr. Honeycutt happens to walk by on his way into the Jane and John Justin Neurosciences Center. After a couple of steps, he realizes who he has passed and stops in his tracks. He comes back to say hello and marvels at the success of Ryan’s surgery.
“It’s a modern medical miracle,” he tells Kayla.
Then it’s time for a visit with Warren Marks, M.D., a neurologist and medical director of the Movement Disorders and Rehabilitations Programs at Cook Children’s. He sees Ryan every three months.
Ryan spent significant time with Dr. Marks before and after surgery at the Cook Children’s Motion Lab, which is equipped with technology that enables a specialized team the ability to analyze the unique movement of each individual patient and plan a treatment plan for them.
Ryan goes through a routine checkup with Dr. Marks. Then they go out to toss a rubber ball to each other. Dr. Marks leaves the game for a bit and gets a reflex hammer that he uses as a make-shift bat. They are having fun and both are in a great mood.
“This is so rewarding. This is why you have a DBS program because you get kids like this," Dr. Marks said. They come back to being completely normal kids. They come back to doing everything they were doing before the surgery. Everything they want to do. It’s perfect.”
Ryan has been cleared to play baseball, basketball and at recess. He’s not allowed to play contact sports like football or soccer. But he does take his football to school to play catch.
His friends call him the robot because of the surgery that includes two battery-operated pulse generators, much like pacemakers, implanted near the collarbone. Ryan doesn’t mind the nickname at all. He kind of enjoys it.
He shows his friends a video Cook Children’s made as it followed Ryan toward his surgery last year. And what do they say?
“They are like, ‘Wow. It’s amazing what modern technology can do these days,” Ryan said.
Did we mention he’s a really funny kid? Even during his worst days, he maintained his sharp sense of humor. But now the smiles come much easier to everyone in the household and even the tears aren’t so bad lately.
“When he was looking at the video the other day, every time I watch it I cry because I get to see where he was and where he is now,” Kayla said. “It’s not crying because I’m sad. It’s crying because I’m happy. I tell him, ‘Ryan I love watching it but it makes me cry.’
Kayla noticed something was wrong with her little boy around September, 2014. She noticed Ryan running differently than normal during one of his baseball games.
When asked what was going on, Ryan said he couldn’t help it. Then after noticing that his toes on his right foot were curling in, Kayla took her son to the family doctor.
Kayla remembered she had cousins who had dystonia and called her aunt to talk to her about it. After the conversation, Kayla arranged a referral to see Dr. Marks.
Dr. Marks commented that Kayla reminded him of someone and then as they talked, he found out that one of her cousins was not only a dystonia patient, but the first one that Dr. Marks treated at Cook Children’s who had deep brain stimulation surgery performed on her. The surgery was done 15 years ago before Cook Children’s began its own DBS program.
After an initial diagnosis, Dr. Marks verified that Ryan had a genetic version of dystonia.
Dystonia is a disabling disease and sometimes painful condition that limits children in many ways, impacting motor, cognitive and social development. Because medications have a limited effect on most forms of dystonia, Cook Children’s began a Deep Brain Stimulation Program of its own in 2007.
Kayla admits to being scared and nervous at the unknown of surgery. But after talking to Dr. Marks and his team, she hoped this would be a fresh chance for Ryan to return to the little boy he was before dystonia began to take over his body.
Ryan walked with his right foot on his toes and his right arm is now curled in, making it difficult to use. She hoped for Ryan to be able to walk and run like before, but also to use his right hand to write. He had to dictate his work at his elementary school.
Kayla said the hardest part was watching the things Ryan could do and how active he was, playing sports and being a typical little boy, to where he needed help walking, taking a shower or cutting up his food.
But that was then. Now Ryan is back to being the fun-loving, sports playing, ornery little boy he was before the surgery.
“The best part of all this … he’s right there,” Kayla said pointing to Ryan. “He’s walking, running and jumping. He’s able to take care of himself. No parent ever wants to see their child go through what Ryan went through. But hands down, we got more than we ever imagined.”