Dr. Raphael Guzman and Grace Johnson
"It wasn't until like a month after the operation that I really understood the implications of it all," said Grace, 15, at a recent follow-up clinic appointment one year after Packard pediatric neurosurgeon Raphael Guzman, MD, removed a spinal tumor that had been choking off her body's ability to move.
"The size of Grace's tumor, in that location, was as bad as it gets," Guzman said. "It was in a spot that's the highway between the body and the brain."
And that highway, from the sixth cervical to the second thoracic vertebrae, had become dangerously clogged.
Pediatric orthopedic surgeon Lawrence Rinsky, MD, was the first to see Grace at Packard after an orthopedist at another hospital couldn't determine what might be wrong with the girl who had been so active at home in the central California town of Friant. By then Grace's spine had become curved and her earlier diagnosis of scoliosis was becoming worse. She felt weaker than ever, especially on her right side.
"I asked her to stand on the toes of her right foot," said Rinsky, professor of orthopedic surgery at the Stanford School of Medicine. "She couldn't do it. That's when I ordered the MRI."
What the MRI showed was a tumor mass that, according to Guzman, had been pressing on nervous tissue that controlled the movement of Grace's body.
"Any surgery in that area is very risky," said Guzman, assistant professor of neurosurgery at the School of Medicine "All the information that the brain sends to her body is sent through there. In that specific area, you have nerves coming off the spinal cord that go to your arms and hands.
Rinsky said that in about one out of every 200 scoliosis patients he sees, a tumor or cyst is the true cause of curvature of the spine. "There are certain findings, certain signals in the history and exam, that this is not just an ordinary scoliosis," he said. "These are very subtle indications. The good news is these kids present with scoliosis before they are paraplegic. Neurologically, the bad news is it takes a while to diagnose."
Grace's mother, Diane Sharp Johnson, said the uncertainty, and fear, of not knowing what mysterious malady was sapping the vitality of her daughter had led the family to "do our share of checking around" before deciding that the best place to treat Grace was at Packard Children's.
By the time her daughter was wheeled into the operating room for the seven-hour surgery, in which Michael Edwards, MD, chief of pediatric neurosurgery, participated, Johnson said she felt something akin to waiting for a long-delayed flight to land safe and sound.
"You know that eventually it will arrive," she said. "We had a lot of friends praying for us and for Drs. Guzman and Edwards."
"We were all amazed at how well she looked after surgery," said Guzman. "It takes a highly-specialized center like ours to even attack something like this. Grace has no neurological deficits. Of course, we'll continue to watch her for any changes in her strength. Theoretically, in a worst case scenario, she could have ended up paralyzed from the neck down."
But, in fact, Grace is back in her second year of high school and perhaps even more exciting for her, riding — and jumping — her thoroughbred, Reba, which the Make-a-Wish Foundation granted her.
And Rinsky notes that because of Guzman's surgical skill in replacing spinal bone after surgery, Grace's scoliosis has not only been stopped in its tracks, but is improving to the point that it may disappear.
"Do you want to see her scar?' Grace's mom asked a visitor as she lifted her daughter's hair to reveal a slight mark down the back of her neck.
Grace shot her mother a look, just another sign that her life as a normal teenage girl had returned.