Story on Lori's Dad, Tom Wasdin

FLORIDA TODAY February 5, 2008 Taming a painful 'beast': Trigeminal Neuralgia After 30 years of facial ailment, patient finds relief, but still searches for cure... After 30 years, Tom Wasdin, a widely known retired local businessman and philanthropist, still refers to the painful facial affliction he has quelled -- at least for now -- as the"beast." Frequently misdiagnosed and poorly understood, the condition's medical name is trigeminal neuralgia, which causes so much nerve pain that doctors sometimes call it "suicide pain," as some people end up taking their own lives. But Wasdin's message is one of hope, not despair. "Don't give up," he said. "There is life after this. I knew, somewhere along the line, I could be helped and others can be, too." He and his wife, Susie, a co-owner and vice president of Wasdin Associates in Cocoa Beach, recently went public with their struggle against the chronic disorder, not only to draw attention to it, but also to their mission of helping to find a cure. The couple has pledged $600,000 to the University of Florida's College of Medicine to help jump-start a cutting-edge research program, which will be housed initially in the McKnight Brain Institute, according to university officials. The money will go toward the establishment of a permanent Endowment fund, whose interest will be used to attract and pay top scientists and eventually to set up a separate research center. Like so many aspects of trigeminal neuralgia, researchers acknowledge that little is known about how many people suffer from the disorder, which is classified as an "orphan disease," or one affecting fewer than 200,000 Americans. As such -- and also because no one dies directly from the disease -- it is difficult to obtain funding, or research attention, said Roger Levy, chairman of the patient-founded Trigeminal Neuralgia Association in Gainesville. "Statistically, it doesn't show up very often," said Levy, who also has the condition. "But we believe there is an epidemic, and that it is far more pervasive than is thought." Anecdotally, Levy said, it takes some seven years between the onset of facial pain and a proper diagnosis, as the pain often is mistaken for a tooth or jaw problem. In Wasdin's case, it took five years for a diagnosis. "It began as a mild hindrance," he said, describing an early tingling sensation on one side of his face that began in 1975. "Over time, it turned into a devastating experience." At its worse, the pain felt like an "electric shock" shooting across his cheek, the 72-year-old former developer and college basketball coach said. "Or, like sticking a red-hot ice pick into the brain." A touch, a smile or even a gentle breeze could trigger that pain, Wasdin said, which researchers think is likely caused, in most cases, by a blood vessel impinging on the fifth cranial nerve. One of 12 pairs of nerves in the face, the trigeminal nerve is the largest, taking its name from its three branches that conduct sensations across the eyes, nose, forehead and upper and lower jaw. "The condition has exacerbations and remissions, where there is nothing for a year, and then it strikes again," said Dr. Albert Rhoton, professor and chairman-emeritus of neurosurgery at the University of Florida's College of Medicine. "The episodes tend to worsen over the years," Although there is no cure, Rhoton said, some patients can find pain relief through microvascular decompression, an operation in which a surgeon pushes aside the vessel, if one is found, and places a piece of material between the nerve and blood vessel to interrupt the pulsating between them. "It is the most effective procedure we have that doesn't destroy the nerve," Rhoton stressed. "Afterwards, some 70 to 75 percent of patients can go 10 years without pain, and some even get pain relief for life." Melbourne neurosurgeon Dr. Jonathan Paine of Holmes Regional Medical Center agreed. "It is the gold standard for surgery," he said, "and the most definitive approach that goes directly to the heart of the problem." Because the operation takes place so near to the brain stem, however, he said, patients generally stay at least two days postoperatively in the hospital, making it a major surgery. Wasdin underwent the decompression procedure after taking Tegretol, an anti-convulsant drug often used to block nerve firing in other diseases, such as epilepsy, to fight his pain. Although the drug worked well for a while, he eventually needed higher doses, which caused side effects, such as nausea and dizziness, and a "terrible quality of life," he said. So, Rhoton performed the operation in 1980, giving him about 10 months without pain before "the beast returned," as he was driving over the causeway to Cocoa Beach, watching a beautiful sunrise. "When it came back, it was one of the most discouraging days of my life," he recalled. Still, through his deep faith and the constant support of his wife, Wasdin said, he kept seeking ways to dull the pain, turning to a number of other approaches, including acupuncture and radio-frequency treatment to injure or burn the culprit nerve fibers. The radio-frequency treatments worked for a number of years, before the pain came back first on one side of his face and then the other -- considered a rare phenomenon. Discouraged and uncertain what to do next, Wasdin ran into neurosurgeon Dr. Jeffrey Brown of Great Neck, N.Y., at a 2006 meeting on trigeminal neuralgia in Orlando. Brown, who serves on the medical advisory board for the disorder's association, suggested he try balloon compression. "I didn't know anything about it," Wasdin said. "But he told me 'less is best,' " describing the minimally invasive outpatient procedure Brown later performed, using a balloon-tipped catheter to squeeze part of the trigeminal nerve against the hard edge of the brain covering and the skull to bring relief. It can be repeated, as needed. And so far, it seems to be working: Wasdin feels so well, he said, that he now serves on the board of the Trigeminal Neuralgia Association. "I've been blessed today," he said. "I have no pain, and I'm not on medications." Added his wife, Susie, "He probably will not benefit directly from the research (at the University of Florida), so why did we want to do this?" "The pain is so debilitating, if it can help just one other person," she said, "it will be worth it." For more information go to tna-support.org Any donations are greatly appreciated! To donate money to the University of Florida research iniative please include this: Check payable to: The Facial Pain Research Institute (this is a division of Trigeminal Neuralgia Association, a 501(c) (3)-non-profit organization) Mark the check -Research-/Tom Wasdin Iniative Mail Check to: Tom Wasdin 29 Riverside Drive #602 Cocoa, Florida 32922