Man who had disabling face pain reaches out to others
May 15. 2003 6:01AM
By Diane Chun
Sun medical writer
Michael Pasternak was a 50-year-old Nashville corporate executive in 1990, when he was laid low by what began as a toothache and escalated into the worst pain he could possibly imagine.
Pasternak is one of some 25,000 to 30,000 Americans who have trigeminal neuralgia, but at the time, the condition was a mystery to him.
"The pain was on the right side, and went right through my mouth and the top of my head," Pasternak recalled. "Even for a big fellow like me, it was sharp enough to put me right on the ground. It is not constant, but it is disabling."
Pasternak was lucky; a neurologist diagnosed his condition within five months. For many TN sufferers, the elusive diagnosis can take years.
An early study showed that about one in every 25,000 people are affected, based on estimates from the Gainesville-based Trigeminal Neuralgia Association. Each year, another 15,000 cases will be diagnosed. It affects more women than men, and generally strikes those over the age of 50. It also affects about 2 percent of multiple sclerosis patients.
In many cases trigeminal neuralgia, which is usually caused by compression of a blood vessel against the trigeminal nerve that conducts sensations from the face and mouth to the brain, is misdiagnosed as a dental problem, sinusitis or other medical condition.
Like many TN patients, Pasternak was given anticonvulsants, usually administered to prevent seizures.
"I spent two years on a combination of antiseizure medicines, and twice fell asleep at the wheel," Pasternak said. As an executive, it was increasingly difficult for him to remain sharp. Sometimes, just touching a phone to his mouth sent excruciating pain shooting through his head. Other times, the pain seemed to go into remission, only to return if he stopped taking the medication.
"After two years of being a zombie, I went to my neurologist and told him I needed to find another option," Pasternak said.
That option was surgery with Dr. Peter Jannetta, a Pittsburgh neurosurgeon. Jannetta had developed a procedure called microvascular decompression to relieve the pressure on the trigeminal nerve and protect it from further damage.
A quarter-sized hole was drilled in Pasternak's skull behind the ear, the blood vessels compressing the nerve were cut off, and the nerve was padded with shredded Teflon.
"I woke up in intensive care, and the pain was gone, after two years," he said. He still smiles, telling the story today.
During his week of hospitalization, Pasternak said he met 26 other patients, all with TN. Realizing for the first time that he was not alone in his suffering, he started a support group, sharing his story with the local newspaper and including his phone number.
"I thought this was a rare disorder, but I had 125 calls that first
week," he said. "I met a woman who had developed this 15 years before,
and had literally trained her body not to feel pain. She said it was too
late for her, but not too late to help someone else."
In starting that support group, Pasternak wrote to the national Trigeminal Neuralgia Association for information.
Little did he know that he was getting in touch with Claire Patterson, who was putting together that information on her kitchen table in the little seaside town of Barnegat Light, N.J.
Patterson had learned - painfully - about TN when she noticed that her teeth were becoming increasingly sensitive to cold or heat. Her dentist assured her there was nothing wrong.
"One day I was putting my makeup on, and an electrical shock went right through the tip of my nose," Patterson said. "I thought I was in 'The Exorcist' and my head was spinning around."
She consulted a neurologist, who explained that she had trigeminal neuralgia.
"My response was 'What's that? Will it kill me?'
"He said, 'No, but you may wish that it would,' " Patterson said.
She suffered through 10 years of increasing pain that spread from the tip of the nose to the whole left side - cheek, teeth, tongue and nose. She was on three different medications, but they weren't helping. She could no longer brush her teeth, eat or talk when she entered the hospital.
Patterson, too, had the microvascular decompression surgery, and has been pain free for 15 years now. But, as she explains, the pain is something that no TN sufferer will ever forget, and she was determined to do something about it.
"I decided to give it a year or so and start an organization," she said. "I rounded up some board members, incorporated, filed for our tax exemption, and we got started."
The national organization now has 22,000 members, and in January of last year, it relocated to Gainesville.
Here to help
Pasternak, who retired at the age of 60, has also relocated to Gainesville and is on the board of directors.
"Back in 1992, I didn't even know the questions to ask (when told I had TN)," he said. "And I would have tried any procedure that would stop the pain. Now, through this organization, we have the wherewithal to help others."
Pasternak organizes a TN conference every two years, where patients, researchers and medical professionals can mingle and exchange information. The next conference, in Orlando next year, will be co-sponsored by the University of Florida.
The organization has grown to encompass more than 70 support groups nationally and others in Canada, Russia, Israel and Australia, he said.
Patterson said the organization could have moved to any number of metropolitan locations, but the big drawing card of Gainesville was its community feeling "paired with the benefit of a large university that includes the Mahan Facial Pain Center, an acclaimed neurosurgeon like Dr. Al Rhoton, the Comprehensive Pain Research Center and the McKnight Brain Institute.
"We are now trying to promote more research through NIH. So this seemed to be a perfect blend for our present operation and future direction toward research," she added. "We are trying to be the catalyst to make things happen."
Looking back on a past blurred by pain, Patterson said, "I was told
to take the medicine and learn to live with the pain. There are others
out there who might not have to suffer needlessly for years, if they had
access to the right information. That's what our organization is all about."
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