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.
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.
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.