The Beginning...

The TMJ Association, Ltd., was founded in August 1986 by Terrie Cowley and Sandra Geilfuss, both sufferers of Temporomandibular Joint Disease. Their intent was to establish a support group which would meet monthly, to provide a forum for the exchange of experiences, information, understanding and emotional support for TMJ patients. The founders met with most of the professional practitioners treating this problem in the Milwaukee area in order to gain insight into the treatment approaches used by them and their attitudes toward the TMJ patient.

The TMJ Association was organized under the laws of the State of Wisconsin and has earned a 501(c)(3) status in December 1989. As a corporation, The TMJ Association established an all volunteer Board of Directors. The Board established an all volunteer Scientific Advisory Board to provide technical insight into the complex issues addressed by the Association.

The people involved in The TMJ Association began their search for knowledge of TMJ diseases and disorders because of their own experiences with treatments. The early founders were willing to acknowledge that their treatment outcomes may have been the exception to the rule. They began their quest to learn how other patients were faring and examine the scientific knowledge base relevant to diseases of the jaw joint.

At those early meetings, individual dentists were invited to present their assessment of the "TMJ problem" to the group. All too often, the information presented by these professionals was packaged in what Dr. Harold Perry called "guru programs" learned by those who attended "sporadic, single-concept 'Hilton University' weekend TMD education." 1

We found that many of the patients of these professional providers began attending our monthly meetings with hopes of finding solutions to the problems that compromised the quality of their lives. They were searching for a way out of the quagmire in which they found themselves abandoned. Over time, it became clear that there were a multitude of problems in this field, with very little consensus on anything and much controversy on everything. It became apparent that a solution was not readily available for patients, and we needed more information founded on valid scientific studies.

Taking TMJ "One Step at a Time"...

At this point, The TMJ Association broadened its focus. We conducted searches of all the available literature and solicited opinions on that literature from scientists outside the field. Gradually, as patients from throughout the country sought us out, we gleaned more information to share with others. By approaching the National Institute of Dental Research, we were able to assess the amount and direction of funding of temporomandibular disorders. Then, the Food and Drug Administration was interviewed to learn how they planned to deal with the Class I recall of the Vitek TMJ implant, what they were doing about Silastic TMJ implants, and how they would notify the patients of the defective devices. We contacted the American Dental Association and The American Association of Oral Maxillofacial Surgeons to obtain information regarding their activities to ensure the safety of the TMJ patients of this country.

1992

It was shortly after we presented evidence we obtained to the Congressional Committee on Government Oversight, Subcommittee on Human Resources and Intergovernmental Relations that the pitiful state of TMJ science was first revealed. At the Congressional hearing of June 4, 1992 entitled: "Are FDA and NIH Ignoring the Dangers of TMJ Implants?" we learned "that the FDA has never required that the manufacturers of implants prove that they are safe or effective, and the NIH, with logic lifted right out of Alice in Wonderland, has not funded research on the safety or effectiveness of implants or grafts because they believed them to be inadvisable."² We also learned that animal studies were conducted years after implantation into humans to confirm the pathology they were seeing in humans.

1993

This was followed by information presented at the First International Workshop on TMDs and Related Pain Conditions, sponsored by the National Institute of Dental Research in 1993. From the preface to the proceedings, we learned that "the field of TMJ is currently characterized by a variety of concepts and approaches, many of which have little scientific basis, regarding how best to diagnose TMDs and how best to treat them. These are almost matched in number, and certainly are matched in the zeal of those who advocate them, by the numerous theories advocated on the etiology and pathogenesis of TMDs. Despite their limited scientific basis, many of these clinical approaches are in widespread use, at considerable financial, and in some cases functional, cost to the population."³

1995

In 1995, the publication of a systematic review conducted by Alexia Antczak-Bouckoms, D.M.D., ScD., M.P.H., to evaluate in broad terms the strength of evidence regarding therapy for temporomandibular disorders showed that "the literature on therapy for TMD consists primarily of uncontrolled observations of outpatients such as uncontrolled clinical trials, case series, case reports, and simple descriptions of techniques. It is generally agreed that such uncontrolled observations, while contributing to knowledge about therapy of TMD, are subject to considerable bias and thus difficult to interpret. If treatment of TMD is going to follow the trend in medicine, to base patient-care decisions on evidence rather than expert opinion or pathophysiologic rationales, then more rigorously controlled clinical trials of most therapies will be necessary."⁴

1996

In 1996, the National Institutes of Health Technology Assessment Conference on Management of Temporomandibular Disorders told us that "not only is there not good agreement on what to call it, there is no common understanding of what jaw pain represents," confirming that nothing had changed since the NIDR workshop of 1993. According to Dr. Judith Albino, Chairman of the NIH committee, "we're dealing with problems that have no clear diagnosis."⁵ In spite of concerns raised by these dramatic treatment failures, the absence of clear guidelines for diagnosis and treatment means that many patients and practitioners continue to experiment with new and inadequately tested treatment approaches. Since almost no scientifically valid, clinical studies have been established for the best treatment for TMD, the Committee urged doctors and dentists to use great caution, particularly for the use of surgery.⁶

Scientific Progress with TMJ Disorders

Over the past decade, The TMJ Association has sponsored five scientific meetings in conjunction with the National Institutes of Health aimed at expanding the base of TMJ science and making recommendations for further research. There is now consensus that the TMJ Disorders represent a complex family of disorders best studied with a systems approach in which investigators from many disciplines work as a team, exploring all aspects of the disorder from genes and molecules to the whole person living in an environment.

The most recent scientific meeting explored the finding that many TMJ patients experience one or more other systemic conditions that also predominantly or exclusively affect women, including chronic fatigue syndrome, endometriosis, fibromyalgia, generalized pain conditions, interstitial cystitis, irritable bowel syndrome, rheumatoid arthritis, and vulvodynia. Scientists at the meeting were enthusiastic that discovering a common pathway linking these overlapping conditions would have the potential of leading to a therapy that might benefit all of them.

TMJArchive

Additional history on The TMJ Association and TMJ disorders can be found on www.TMJArchive.org.  TMJArchive  presents articles, site links, and information that we've gathered over the past 20 years from our patient advocacy efforts.

1 Dr. Harold Perry, "Above All Else, Do No Harm," Journal of Craniomandibular Disorders: Facial and Oral Pain, Volume 5, No. 2, Spring 1991

2 Congressional Hearing, June 4, 1992, "Are FDA and NIH Ignoring the Dangers of TMJ Implants?"

3 Barry J. Sessle, Temporomandibular Disorders and Related Pain Conditions, Volume 4 Progress In Pain Research and Management, IASP Press, 1995, National Institute of Dental Research, First International Workshop on TMDs and Related Pain Conditions, 1993

4 Alexia Antczak-Bouckoms, D.D.S., ScD., M.P.H., "Epidemiology of Research for Temporomandibular Disorders," Journal of Orofacial Pain, 1995; 9:226-234.

5 Dr. Judith Albino, National Institutes of Health Technology Assessment Conference, April 1996

6 Paul Recer, "How to Treat Jaw Pain Puzzles Even the Experts", The Washington Post, May 7, 1996.

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