Roderick "Rod" Ball Jr. was 6 when the first tingling pain began in his leg. Although the MRIs and X-rays showed perfectly healthy legs, his pain got worse.
Finally, one May 2009 night in an emergency room in his hometown of Atlanta, Rod's pain became so severe that doctors could only suggest rendering him unconscious.
"They can sedate you to the point where they just put you out, and that's what they wanted to do," Roderick Ball Sr. said.
He remembered that Saturday night, feeling helpless in the face of his son's pain.
Doctors at Children's Healthcare of Atlanta at Scottish Rite had not wanted to operate on the tumor, called a schwannoma, which grows on the sheath of tissue that surrounds nerves,
"There's nothing you can do," he said. "I guess this was just God's intervention. I just started surfing the Web, and I found Dr. Belzberg."
Through his parents' perseverance, 11-year-old Rod now has a second chance at walking. Ball had found a surgeon who specialized in schwannomas at Johns Hopkins Hospital in Baltimore.
"I e-mailed him, and in 15 minutes, he e-mailed me back," Ball said. "I couldn't even believe it."
Specialists at Johns Hopkins believe Rod has a rare condition called schwannomatosis, which affects 1 in 40,000 people.
It took two separate surgeries -- the first lasted 12 hours -- to remove the basketball size mass that was pressing on Rod's spine and displacing his organs.
"He's the worst one I've seen, in terms of just sheer tumor load," said Dr. Allan Belzberg, who operated on Rod in November.
Belzberg is the director of the Peripheral Nerve Center at Johns Hopkins Hospital.
"Having said that, we see patients who have schwannomatosis and these are just terrible conditions," he said.
Schwannoma Tumors Cause Numbness, Weakness and Pain
Dr. Amanda Peltier of the American Academy of Neurology said that schwannomas form on the outside of periphery nerves "like your sciatic nerve, or your funny bone." Most often they form at the first nerves leaving the skull near the ear and can cause hearing loss and balance problems.
Peltier said benign schwannomas such as Rod's won't grow into the nerve, but they can grow so big that they crush the nerve.
"So, for example, a schwannoma of the sciatic nerve would cause weakness of the leg so you wouldn't be able to pick up your foot or bend your leg, and the back of your leg would feel numb," she said.
Rod's Condition Is Rare Among Rare Conditions
Experts say it's rare to develop a schwannoma at Rod's age.
"A typical age for developing a schwannoma would be between 20 and 50 years old," Dr. Nicole Ullrich, a neurooncologist at Children's Hospital Boston, said.
Even if doctors had caught Rod's schwannoma at age 7, Ullrich said, any delay in surgery might do long-lasting damage to the nerves.
"The concern with the delay in the surgery is how much function he's going to recover," she said.
Belzberg said Rod's condition is rare, even among people with schwannomas.
Often schwannomas are caused by a genetic condition called neurofibromatosis II, where schwannoma tumors can grow all over the body. But Rod's tumors seem to be confined to his spine and abdomen.
"It's more likely he's going to have something called schwannomatosis, and segmental schwannomatosis because it's isolated to a certain area of the body," Belzberg said.
In Rod's case, Belzberg said, a random mutation caused the tumors.
"Schwannomatosis, if that's what he has, is quite rare," Belzberg said. "It's somewhere on the order of 1 in 40,000 people. He will probably grow these tumors in this segment of his body for the rest of his life."
Belzberg said Rod's first tumor had pressed so long on his spine that pieces of his vertebrae eroded away.
Tumor Cause Unbearable Pain, Possible Damage
"It was horrid," Belzberg said. "When he presented, he was just in agony and very medicated for pain and even with very high doses of narcotics he was just in horrible pain."
During the first operation, another surgeon had to place titanium rods along Rod's spine to support the areas eroded by the tumor. A second surgery removed most of the tumor in his abdomen that pushed on Rod's organs.
But some damage had been done to Rod's legs during the time he could not walk. His muscles contracted, and his spine had curved. Ball said the family tried physical therapy to straighten out Rod's legs, but after months the family and doctors could see it was not working.
Belzberg said, "To put him in a better position, it was easier to break his bones surgically and to realign things."
Rod will be able to walk again after he heals, Belzberg said.
The boy's father said, "He's in braces right now … you can wear shoes in them and it allows him to stand up. The prognosis is he will be walking, there's no doubt about it. How well, we don't know."
Rod said, "I've learned to cope with the pain. I've learned that sometimes when you have pain, you just have to work through."
The family has made arrangements for him to fly back to Baltimore four times a year for tests. Rod will likely have to have four MRIs a year for the rest of his life to makes sure his tumors aren't growing out of control.
Researchers are looking for medications to treat schwannomas, Belzberg said, but watchful waiting and surgery are the only treatments.
Boy Has Chance to Walk Again
"I have to say I feel a lot better after the surgery," said Rod, who said it still hurts sometimes. "But I'm a lot more mobile, and I've been able to do some things that I wanted to."
For now, Rod said, he's happy to just invite friends over again, to go to school or to play with his two sisters, ages 13 and 8.
"They like to run around and play with my dog, chase her and let my dog chase us," he said.