Smiling, Once Again
words by merry sue baum / photograph by pete byron
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nne Ciemnecki suffered with agonizing facial pain for more than 14 years. At one point, it became so unbearable she asked her doctor to “please prescribe a gun.”
Although she wasn’t serious, it is not surprising that the 57-year-old wanted relief, any way she could get it. She suffered the most painful affliction known in medicine: trigeminal neuralgia (TN). It is so excruciating, in fact, it’s been dubbed the “suicide disease,” since TN sufferers have been known to take their own lives.
That was more the case years ago, however, when little was known about the disorder.
TN produces sporadic, electric shock-like pain on one side of the face that lasts anywhere from a few seconds to a few minutes or more. The pain usually lasts longer with each subsequent attack and can be triggered by the lightest of touches: combing hair, brushing teeth, a kiss, or even a mild breeze blowing across the face.
Ciemnecki had atypical TN, which causes
continuous, rather than episodic, pain. “I went to general doctors, neurologists, neurological dentists and regular dentists,” she recalls. “Most didn’t help me and many made misdiagnoses, because I didn’t have classic TN. Several even implied I was crazy, telling me it was just my imagination.” The disorder is relatively rare, only about one in 150,000 people have it, which also makes it difficult to diagnose. Eventually, the East Windsor, NJ, resident consulted the world expert on TN, a physician in California. He explained that the pain is the result of a blood vessel pressing on the trigeminal nerve at the base of the brain. A surgical procedure called microvascular decompression (MVD) often relieves it, at least for a while. Ciemnecki had MVD twice and underwent Gamma Knife surgery, a noninvasive procedure often used to treat the affliction. She got some relief, but eventually the pain returned.
She finally decided to treat her TN as a chronic condition and stop looking for a “quick fix.” That’s when the California doctor referred her to Gary Heir, DMD, clinical professor of Diagnostic Sciences and clinical director of the Orofacial Pain Clinic at NJDS. Besides being much closer to home, Heir was doing a clinical study on the use of topical medication to control neuropathic pain, including trigeminal neuralgia.
“The most common treatment for TN is drug therapy that uses combinations of antidepressant, analgesic and antiepileptic drugs,” Heir says. “Besides having unpleasant side effects — sedation and dizziness, among others — the drugs are often contraindicated in medically compromised and/or elderly patients. We wanted to find a way to help these people without prescribing heavy doses of systemic medications.”
Although other researchers had been using this method, Heir was the first to try it in the orofacial region. The NJDS dentist fabricated a neurosensory stent to fit Ciemnecki’s palate and formulated a topical paste to put in the stent. She was to refill the stent from four to six times a day, depending on the level of pain. (The paste includes an antiepileptic, an NMDA receptor antagonist that inhibits chronic pain receptors, an anti-inflammatory and an anesthetic.) Patients were divided into three groups: One that used only the topical treatment, another that used only systemic drugs, and Ciemnecki’s group, which used both. The patients returned for follow-up visits every two weeks, and the length of time each was treated was based on their pain levels. In Ciemnecki’s case, it took about two months. “At first I had to refill the stent with medication six times a day,” she says. “Now I only do it two or three times a day, and sometimes not at all. The stent is so small you can talk, eat and sleep with it in your mouth. It’s such an easy, practical solution to an acute problem.”
Heir says study results show that topical medications can provide rapid pain relief for neuropathic orofacial pain, either alone or in combination with systemic medications. Most of the patients in the study reported a 30 to 50 percent reduction in pain, which he says is considered quite good. “Most importantly, patients who can’t take the systemic drugs, for whatever reason, can find relief for this terribly debilitating disorder.”
As for Ciemnecki, she says it feels great to smile again. Both her mother and grandmother suffered from TN. The treatments they were offered had very little, if any, effect. “My son recently got married, so I had occasion to get out my own wedding pictures,” she says. “When I looked at them, it was clear my mother was in pain. But I was able to smile at my son’s wedding.”