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Duke University Joins

 

The “Driving Away the Pain” Drive

 

On Thursday, October 20th Frank Skoviera, Volunteer Communications Director, and his service dog Maxwell pulled out of his driveway in Tampa Florida and started driving the continental USA.  His plan was to raise awareness and support for The Facial Pain Research Foundation’s world-class research projects to cure trigeminal neuralgia and related neuropathic pain.  Frank and Max were invited to visit Duke University’s Pain and Neurological Centers.  During the visit Frank was interviewed by Duke’s Will Alexander to raise FPRF awareness and support within the Duke Community.

 

Driving away the pain: How one patient with a "suicide

disease" is helping others

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, 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.

 

 

First Published Monday, 23 May 2011

 

 

Distinguished New York Times Journalist

 

 

Mervyn Rothstein writes for our webnewspaper

 

 

 

TN and Me

 

 

By Mervyn Rothstein

 

 

 

I’m a lucky guy.

 

 

Yes, I have trigeminal neuralgia, but although sometimes the pain can be very electric and very difficult, so far, knock wood, it is not as bad as what some of the victims I have met, or read about, must deal with.

 

 

Yes, I am a very lucky guy.

 

 

When I was growing up, I had a goal – to write for The New York Times, and to write about the arts. Sometimes, in my 20s, I changed my mind, but eventually I came back to that career wish. And it was granted. For 29 years, I was a writer and an editor at The Times. Six of those years were spent in its arts department, as theater reporter, theater editor of the Sunday Arts and Leisure section, assistant editor of that very prestigious section. I also had many other jobs there – staff editor in the metropolitan news department, education reporter, real estate reporter, deputy editor of its “Escapes” travel section.

 

 

I love the arts so much that I began writing about it freelance, and have written for Playbill Magazine for 20 years, as well as for two specialized magazines, Wine Spectator and Cigar Aficionado. I write a monthly column for Playbill called “A Life in the Theatre,” about folks who have devoted their lives and careers to the stage.

 

The list of people I’ve had a chance to meet, and to interview, can take up several pages, but this will give you an idea: Madonna, Saul Bellow, Toni Morrison, Philip Roth, Stephen Sondheim, Neil Simon, Angela Lansbury, Nicole Kidman, Tom Selleck, Demi Moore, Kathleen Turner, Jerome Robbins, Garrison Keillor, John Updike, Kirk Douglas, Sammy Davis Jr., Arthur Miller. There are several hundred more.

 

 

And to top it all off, I’ve been married for 39 years to a wonderful woman, my wife, Ruth. And we have a great daughter, Jill.

 

 

Very lucky.

 

 

So when in the spring of 2005, the day before my wife and I were heading off to Paris, I felt a sudden, intense pain in my mouth – on the right side, in a space between teeth, where I was scheduled to have a bridge installed when I got back, I was annoyed but thought nothing of it.

 

The pain went away for two days, and then, on our first full day in Paris, it came back strongly. I went to a Paris dentist, who thought it was a tooth – a familiar story to TN sufferers who encounter dentists and doctors unfamiliar with the disease who think it must be something in the mouth.  When I got back, my New York dentist thought the same, and he sent me to an endodontist for a root canal – of course. I’ve heard of people who have five teeth removed, or five root canals, until someone realizes the problem is elsewhere.  I had just one root canal.

 

 

I was lucky.

 

 

After the root canal, and the novocaine, the pain went away – for a while. It came back a week or so later, worse than before, and I went back to the endodontist, who happily figured out what must be going on – it’s trigeminal neuralgia, he said, and he sent me to a facial pain specialist. I’ve got TN in the bottom branch of the nerve.

 

 

 

The specialist prescribed Trileptal, which eventually helped, and miraculously the pain disappeared again – for 16 months. But when it came back, he and the other doctors I went to, including neurologists who had no essential concept of TN,  couldn’t help. And he and others I saw didn’t seem to know that there were alternatives to the pain other than medication – the surgical procedures that might makes things better.

 

 

But one of them suggested a neurologist, Dr. Jeffrey Cohen, who had real experience with TN. And he gave me the name of Dr. Jeffrey Brown, who has years of expertise in treating it. Both are involved with TNA The Facial Pain Association, and without them who knows where I’d be today.

 

 

I had a stereotactic radiation treatment, and it helped, keeping the pain away for nearly three years (though the pain has returned intermittently, especially in the last several months, and, as we all know, may return again, at any moment, unpredictably, for no reason).

 

 

Yet I’m a lucky guy.

 

 

The treatments for TN, as we all also know, are no guarantee, and often cause nerve and facial injury, or numbness, or both, and while certainly better than no treatment at all are an incomplete answer.

 

 

We need a cure. TN has for too long been an “orphan disease,” largely ignored by the medical establishment, in part because there are (happily) not tens of millions of victims. But nonetheless, many people are suffering, and sometimes suffering horribly. We need a cure. We need to raise money to find that cure. That’s why I’m here, and that’s why I’ll be writing regularly for this Web site, about people who have TN, about people who are raising that money to find a cure, and about the medical researchers who are seeking that cure. My goal is to do anything I can to raise consciousness about this horrible scourge.

 

 

Writing about TN, helping in this admittedly small way, makes me proud. Having the chance to meet and talk with and interview these people, these truly wonderful people, just as I have done with those hundreds of creative artists, is another goal I’ve set for myself, one I hope to meet, beginning now.

 

And I hope to remain a lucky guy.

 


 

 

 

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Success in answering critical questions about the role of genes in TN and other

nerve-related facial pains relies on private support. Here are ways in which donors

at all levels can join The Facial Pain Research Foundation in finding a solution:

  • Support full expenses of one patient      in the study:     $1,770
  • Pay for the genotyping of one research      participant:    1,100
  • Help with the phenotyping costs for      one participant:     600
  • DNA extraction from one person’s      saliva samples           40
  • Pay for saliva kit & shipping cost      for one participant      30
 

 

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