CHICAGO -- For 20 years, LaVerne Petersen was afraid to laugh, worried that even the glimmer of a smile could send her into a fit of agonizing pain.
Petersen kept her face as still as possible to avoid flare-ups of a rare facial nerve disorder that could be triggered by something as innocuous as touching a makeup brush to her cheek, or sipping from a glass, or smiling at a joke.
"We lived with a sword above our heads. Nothing could ever help it, it was just unreal," said LaVerne Petersen.
Desperate for anything to stop the attacks of trigeminal neuralgia, Petersen, 86, underwent a procedure known as "Cyberknife" to treat her disease. Doctors used new robotic technology ordinarily used on cancerous tumors to shoot high doses of radiation into the damaged nerve in her brain.
Now, seven months after surgery, the smile is back on her face. Petersen is virtually pain-free and joking again with her husband, going out for breakfast, even accepting invitations to parties.
Advocates caution that treatments for the disorder vary widely, and that no regimen has been proven to cure what has been nicknamed "the suicide disease" because of its unbearable pain.
About 15,000 people are diagnosed with the condition each year in the U.S., said Jane Boles, executive director of the Trigeminal Neuralgia Association in Gainesville, Fla.
Much is still unknown about the medical condition, she said.
"This is still considered an orphan disease or rare disorder," said Boles. "What works for one doesn't work for another."
But Petersen's doctors at Northwest Community Hospital in Arlington Heights, Ill., say her story should offer hope to the 14,000 trigeminal neuralgia patients registered on the national association's Web site.
Based on their success with Petersen, the hospital is treating another patient with the disorder, and doctors hope more will come forward.
Trigeminal neuralgia is a hypersensitivity of the 5th cranial nerve that causes sudden, shocklike facial pains. Although the cause is unknown, it occurs most often in people over 50, experts say. It also has been linked to those with multiple sclerosis, a condition LaVerne Petersen has battled for 45 years.
At first, she thought it was a cavity causing a nagging pain in her right cheek 20 years ago. But dentists concluded that her teeth were in good shape.
A neurologist finally determined that Petersen had the condition, which experts say is so rare it takes an average of five years to be diagnosed.
"This isn't something that even frontline health care professionals know a lot about," Boles said. "That's one of the challenges we have."
Family members knew if anyone could navigate their way through tough medical issues, it would be LaVerne and Pete Petersen, who married 66 years ago after meeting when he was a church baseball coach and she his star left-fielder. Through the course of their marriage the couple helped each other cope with complicated health problems.
Pete Petersen, 95, lost most of his hearing while serving in the U.S. Navy during World War II. His wife was diagnosed with MS in her 40s.
"The two of them have this incredible resource of courage to deal with adversity," said Scott Petersen, the couple's son. "She has been his ears and he has been her legs."
During dinner at an Elks club a few years ago, a sip of wine sent LaVerne into an intense attack. The couple began skipping friends' birthday parties, Thanksgiving dinner, even their beloved "outdoor breakfasts"--visits to the McDonald's drive-through.
"I never knew what to do. I'd stand by helpless. There's no way to control it," said Pete Petersen, who nicknamed his wife "Ms. Gutsy" for the way she dealt with the disease.
LaVerne Petersen tried a variety of medications and went through four surgeries in an attempt to get rid of the pain. But while some of the treatments helped for a week or month at a time, the sharp attacks always came back, she said.
Then late last year at a dinner party, the couple's only son learned about a doctor at Northwest Community Hospital who was using Cyberknife to treat unexpected conditions, not just tumors. He contacted Dr. Stephen Nigh, medical director of the hospital's Cyberknife program.
Nigh had read about cases where trigeminal neuralgia patients were treated successfully with the procedure, but had never done such an operation before. After he and Dr. Richard Broderick, a neurologist, met with her, they agreed to try.
"When I first saw her, she couldn't talk to me. She was kind of bent over. After a half-hour, she could at least look at me," Nigh said. "There wasn't a lot to lose in treating her."
On Dec. 17, LaVerne Petersen checked into Northwest Hospital, where a robotic arm pinpointed the nerve -- it was smaller than the lead on the tip of a pencil -- and administered 5,000 units of radiation. The aim was to injure the neurons so that they no longer transmitted pain.
Three hours later, Petersen walked out with a feeling that her life would be different. The next morning, she told her husband she wanted to go out for breakfast. Six months later, the couple joined other seniors on a bus for a gambling trip.
There is a chance her attacks will resume one day, but the fact Petersen has made it this long without a severe episode is promising, Nigh said.
Petersen said she is grateful to smile again without fear.
"I don't want to miss out on anything if I don't have to," she said. "We are thankful for everything."