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Status of TMD Diagnosis and Treatment A Public Testimony Presented June 12, 1991 to the National Institutes of Health Task Force on Opportunities for Research on Women's Health, by The TMJ Association Ltd., Milwaukee, WI It is my pleasure to present this testimony on behalf of all people afflicted with temporomandibular disorders and their loved ones who experience the frustration and anxiety of trying to make sense of a disorder that lacks consensus on definition, diagnosis and treatment. Specifically, I represent The TMJ Association, Ltd., a nonprofit organization founded in Milwaukee five years ago with the purpose of addressing the needs of TMJ patients in our community. Temporomandibular joint syndrome (TMJ), temporomandibular disorders (TMD) and craniomandibular disorders (CMD) are some of the evolutionary terms currently used to identify this malady. For the sake of consistency, I shall use TMD in referring to it. TMD, as we see it, is a complex, multifaceted disorder of the jaw joint, in which there is derangement of the internal mechanism and affiliated masticatory muscle pain and dysfunction. Patients may experience only the internal derangement, only the muscle pain and dysfunction, or both simultaneously. How common is TMD, who gets it and how? In a pamphlet written by the National Institute of Dental Research (NIDR), studies are cited showing a range of 10 to 77 percent of the population suffering some form of TMD. Literature yields figures of 20 to 60 million Americans having TMD. These ranges are unscientifically broad, and NIDR admits that the “Discrepancies in these test results are owing, in large measure, to dental science's lack of a single definition to characterize the problem.” Women account for 80 to 90 percent of TMD patients and they generally range in age from 20 to 40 years. However, professionals tell us that recently they are seeing an increasing number of teenage patients. These women represent all socioeconomic levels. The approximately 10 to 20 percent of patients who are male almost always experience what is called macrotrauma, that is, a blow to the joint, whiplash, intubation, etc., which precipitates the joint derangement and pain. TMD's celebrity patient, Burt Reynolds, was hit in the jaw with a chair while filming a movie. This accident initiated two years of pain, vertigo, nausea and substantial weight loss. While in women this disorder can also be triggered by macrotrauma, the majority of female patients note gradual onset resulting from microtrauma, e.g., bruxism, clenching, malocclusion, etc. NIDR states that “most TMD research has focused on identifying symptoms of the disorders, rather than the causes”; and that and “until more research is conducted into their causes, these conditions will remain difficult to define and often elusive to diagnose.” Despite NIDR's focus on identifying symptoms of TMD, it claims that dental scientists “have been unable to reach a consensus on what symptoms actually constitute a TMD disorder.” A paper published in the mid?1980s reveals that TMD patients see on average 6.9 specialists before receiving a definitive diagnosis. The fortunate ones see only one professional. Others, like Burt Reynolds, see 13. The most obvious symptoms such as joint, face, neck, back and shoulder pain; joint clicking; popping when opening or closing the mouth end themselves to a fairly direct diagnosis. However, remote symptoms, including visual disturbances, ataxia, hearing loss, and vertigo, can lead a patient from one doctor to another to undergo expensive batteries of tests that yield negative results and leave the patient increasingly frightened and frustrated. The lack of definition and diagnostic criteria has encouraged both the under diagnosis and well as the over diagnosis of TMD. One adult patient suffered excruciating head pain when she was 10 years old. She was sent from one mental institution to another for a period of six years until an internal derangement of the jaw was diagnosed. Another woman suffered debilitating headaches for six years. She mentioned this to her dentist, who diagnosed a TMD problem. After two years of orthodontics and another two years of combined orthodontic and splint therapies, she went to the Mayo Clinic, where she learned that her headaches were vascular in origin, caused by estrogen replacement therapy. The American Dental Association (ADA) states that 80 percent of patients get better with or without treatment. In fact, a recent study show that more patients fare better on professional advice and home treatment, such as hot and cold packs, soft diet, and aspirin, than those who receive more extensive and costly treatment, such as splint, pharmacological, and physical therapies, as well as psychological counseling. Are patients getting better because of treatment or in spite of treatment? We do not know. Are patients being introduced to lifelong chronic pain because of treatment? We can only guess. The FDA reports that all diagnostic and treatment instrumentation for TMD lacks scientific validity. The ADA says that the claimed benefits of diagnostic instrumentation and treatment modalities are unproven. NIDR states that there is no solid scientific understanding of the causes of TMD and, with no standardized curriculum to educate dentists on the subject, diagnosis and treatment of TMD has become an area of controversy. The literature is filled with statements such as the following: “Rarely in the history of dentistry have so many labored so long only to end with such extreme disagreement.” Few afflictions have spawned so much vocal controversy within the scientific community, where available treatments some grounded in science, others of questionable value are more numerous than symptoms.” An inherent dilemma of TMD is that it crosses the boundaries of two disciplines dentistry and medicine. Greater interaction between the two professions is necessary in both the treatment and research of TMD if progress is to be made. Cooperation and joint effort could hasten solutions to the many questions surrounding TMD. In the meantime, what of the women of this country who do not get better, with or without treatment? The women who develop a chronic or remittent course of craniomandibular dysfunction? These women are making a valiant attempt to lead functional lives in the home and workplace while living in a nightmare of pain, uncertainty and misunderstanding. At this time they face years of their lives spent in doctors' and dentists' offices and pain clinics. Because they are in pain and are desperate, they often fall prey to the latest hit?or miss treatments that sound like voodoo medicine. They will spend thousands of dollars on scientifically unproven treatment modalities and, months and years later, end up poorer, no better and perhaps worse. They may undergo surgical procedures and later learn that an implant provokes not only condyle and skull disintegration but also giant cell neoplasia, opening the door to multiple surgeries. Their insurance companies will reject the claims because they say there are no standards for diagnosis or treatment. Their professional health care providers will look at them and say, “We did everything we could. We don't know why you aren't getting better.” I think our women deserve better. I truly hope this brief overview will encourage the NIH to make a commitment to the many TMD sufferers of this country. We request: 1. An intensive program to educate both patients and professional providers as to the realities of this disorder and current treatment efficacy. 2. Focused research on the following: a. Epidemiology of non?patient population base as will as patient population. b. Etiology from the molecular, biomechanical, neuroendocrine as well as physiological and clinical perspectives. 3. Development of treatment programs based on solid scientific research. Endnotes: 1. Greene, C.S. Myofacial pain?dysfunction syndrome: the evolution of concepts, Chapter 12. In The TemporomandibularJoint. Edited by B.G. Sarnat, and D.M. Laskin. Charles C. Thomas, Springfield, IL. 1980.