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Driving away the pain: How one patient with a "suicide disease" is helping others

Monday, November 7, 2016
By Will Alexander

Frank Skoviera, a project manager for IBM, was finishing a meeting in 2001 when he felt something like a feather brushing his neck. Upon touching the area, Skoviera found that the right side of his chin and jaw were numb. A few days later, pain would explode through his gums in response to touch, off and on for days at a time. Numbness and pain spread across the right side of his face.

“The right side of my face could not be touched without causing intense burning, and electrical shock-like pain,” said Skoviera. “This condition makes things like eating, talking, or brushing your teeth so difficult and painful that you have to change your life.”

Sudden, severe pain has been an inescapable part of Skoviera’s life ever since. It forced Skoviera, who has since retired, to take extended leaves of absence from work. Normally an outgoing person, Skoviera withdrew from socializing because of the agony that could be caused by a conversation or a gentle breeze. Even Skoviera’s family relationships were tested, as Skoviera found himself turning down requests from his son or wife to go out to eat, go for a walk, or even have a conversation because of the intense pain those activities could cost.

“I can tell you as being a patient for fifteen years, there’s no area of my life that has not been touched by having this disease,” Skoviera said.

Skoviera has trigeminal neuralgia, a chronic pain condition caused by damage to the trigeminal, or 5th cranial nerve, that supplies feeling to the face and head. The trigeminal nerve conducts feelings and pain from the most sensitive parts of the body, including the eyes, the living insides of teeth, and the dura mater, the protective layer inside the skull that can feel detect stimuli involved in headaches.

So when something--usually a nearby blood vessel rubbing against the nerve, but sometimes complications from conditions like stroke, multiple sclerosis, or a tumor, causes the trigeminal nerve to misfire, the results can be excruciating pain, said Wolfgang Liedtke, MD, PhD, a Duke neurologist specializing in headache and facial pain, both clinically and in his basic science research lab.

“The trigeminal system evolved to provide sentinel information from the head and face, the location where animals have evolved to detect danger. If that system malfunctions, it can cause some of the most devastating pain that humans can suffer,” Liedtke said.  

Historically, trigeminal neuralgia, or tic douloureux,  was labeled a “suicide disease,” Liedtke said, because people with the condition would sometimes kill themselves to end their suffering.

The symptoms of trigeminal neuralgia have been recorded since the late 18th century, but significant progress in its treatment has only been made in recent decades. Today, anticonvulsants, antidepressants, and opioids are sometimes used in treatment. Recently, botox injections have also been applied to reduce the pain. Other options include delicate forms of neurosurgery that can literally insert a tiny sponge between the trigeminal nerve and the abutting artery, vein, or tumor, or gamma-knife radiosurgery that scars the nerve and eventually keeps it from violent misfiring.

But much more progress needs to be made, Liedtke said. Medications help some people, but for others, like Skoviera, they may only reduce the pain, work intermittently, or cause side effects such as dizziness, nausea, or confusion; and since that arterial or other compression of the nerve cannot always be verified, surgical options aren’t an option for everyone.

“We may have kept people from killing and maiming and harming themselves, but it doesn't mean we have a truly effective treatment at hand for this devastating disease,” Liedtke said. “If we did, we wouldn’t have Frank driving around.”

“Driving around” is literally what Frank Skoviera is doing to help people with trigeminal neuralgia. Since retiring from IBM, he has become the volunteer communications director for the Facial Pain Research Foundation, a nonprofit group funding research for new treatments and possible cures for trigeminal neuralgia.

This October, Skoviera and his service dog Maxwell left their home in Tampa, Florida to start driving across the continental United States to talk with researchers, clinicians, patients, people affected by trigeminal neuralgia, and people who have never heard of the condition. Skoviera hopes to raise awareness of the condition, comfort people suffering from it, and talk with clinicians and researchers like Liedtke about finding new treatments in each of the 48 contiguous states.

Skoviera recently stopped at Duke, where he met with Liedtke as well as other national experts in pain, including Tim Collins, MD, and the Center for Translational Pain Medicine’s Ru-rong Ji, PhD, Jongbae Jay Park, KMD, PhD, and Aurelio Alonso, PhD, DDS.

Skoviera and Liedtke
Skoviera, left, and Liedtke, right, pose at the Duke Neurological Disorders Clinic at Morreene Road.

Skoviera shared his own experience with the condition with the Duke team, toured Duke clinics that treat trigeminal neuralgia and related conditions, and discussed a pilot award given to Liedtke to investigate a path to significantly improve treatment for trigeminal neuralgia.

“In addition to being a world-renowned pain specialist, Dr. Liedtke is a very compassionate individual,” Skoviera said. “He is very caught up in the suffering of patients and understands the intensity of their pain.”

Skoviera’s silver SUV is decorated with a large “Drive away the pain” teal wrap as well as more than 20 signed decals from the locations he has visited so far. He and Maxwell have already traveled the east coast from southern Florida to Vermont. “I will go anywhere and speak to anyone,” Skoviera said.

And while medications aren’t always reliable for Skoviera, Maxwell is. “I know for sure he senses that I don’t feel well a lot of the time. If I’m hurting, he’ll come right over and put his body right next to mine. Just having him with me on the trip has been a wonderful source of comfort and support,” Skoviera said.

Skoviera hopes to raise $10,000 through his travels. To donate to the Facial Pain Research Foundation, or find out where Skoviera and Maxwell are now, or ask either of them a question, visit the “Drive Away the Pain” Facebook page, website, or follow him on Twitter.