Summer/Fall 1999

Volume 18, No. 1 & 2

At one time, beginning in 1982...
The TMJ Support Group, Inc., now incorporated as Jaw Joints & Allied Musculo-Skeletal Disorders Foundation, Inc. [JJAMD], was alone in sponsoring support meetings, free public lectures, and in publishing materials on the Patients' Perspective of TMJ. JJAMD was also prophetically alone and early in reporting that most TMJ patients were presenting with many medical signs and symptoms throughout their entire bodies. These symptoms related to seemingly diverse disorders or syndromes that seemed to be emerging at the same time in the public's consciousness--e.g. Fibromyalgia [FM], Chronic Fatigue Syndrome [CFS], Tinnitus, Sjogren's Syndrome [SS], etc.

There were many who believed and shared in our thinking early on. But there were those clinicians, academicians, government agencies -- including NIDR, the Arthritis Foundation, and others who refused to believe in what we were observing. Unfortunately, they had leading edge and/or entrenched positions on the function and malfunction of the Temporomandibular Joints, and/or for the TMJ* disease/disorders to them. [*At that time Temporomandibular Joint Disorders were called only by the historical acronym: "TMJ."] They contrasted with JJAMD's philosophy and mission or summarily dismissed us as "interlopers" as we were not in the "scientific, academic, professional loop." We were, in fact, primarily advocates for the TMJ patients and we were already passionate advocates for prevention through education and awareness at every level. These same sources continue to dismiss or to dominate the TMJ scene at this time. In fact, Milton and Renée, as the pioneer TMJ advocates, were rebuffed by those who were simultaneously bringing awareness and making a name for themselves by advancing their own "Professional and Scientific Perspectives" and agendas. Some, with their own agendas, continue to refuse to acknowledge that TMJ is related, overlapping or impacting upon other allied disorders.

This empirical thinking spilled over to some other Patient Advocacy organizations. They tended to lean on, to be influenced, and to echo those Professionals who came on board to seemingly help their cause but in fact, we believe, were advancing their own cause through research, conferences, and the like, and by adding their own spin to the mix. Patient Advocates support for these other newly emerging disorders became organized and the disorders became "legitimized medical-clinical entities" with the acknowledgment, encouragement, input, and support from the Medical and/or Dental professions, Government Agencies, Arthritis Foundation [AF] and other interested parties. Meanwhile, TMJ continued to founder in the wasteland between Dental and Medical, and with the women victims characterized as "malingerers and psychotics."

There is a "game" that must be played in order to get attention for any human health issue. It is necessary to go through the expected steps of involving and lobbying the Medical, Dental, Governmental, and Grant-making Organizations. It follows that these organizations and agencies must see an advantage in order for them to come on board to help with funding or expertise. For the Patient Advocate organizations, it is an additional burden and very time consuming and often humiliating to "beg" these agencies to "do the right thing" in a timely manner to benefit humankind. Another element that becomes necessary in this game is the need for a celebrity--who knows first hand of the human issue--to become the National Spokesperson in order to gain public and media visibility and Congressional attention for access to funding and widespread recognition. Two celebrities recently in the news as having TMJ, are Brooke Shields and Jenny Craig. We asked Brooke to become our national celebrity chairperson and received a polite turn-down from her publicist.

In addition, every human condition requires a visible and viable grassroots patient movement to advocate and lobby for the needed help. The process of forming allies and alliances becomes more monumental in scope and often overwhelms the original good intentions of the founding fledging Advocacy Organizations; i.e. to simply bring attention to a new cause. It's like the "Cookie Monster Syndrome." It cannot get filled up. You must produce more in order to fill up the Monster -- more monies and more people to do the work and more begging those professionals, patients and others [e.g. families or insurers] to help.

JJAMD might very well be the proverbial "exception to some of these rules." While we have gone through many of these doors, we are admittedly very protective of our mission. We are unwilling to compromise our philosophy in order to achieve our goals. We have remained cautious of those who would like to jump on our bandwagon, but who have different perspectives, agendas, and styles of achieving our mission. So, although we would love to have achieved overnight all that we naively set out to do in 1982, we have become realistic, pragmatic, and disappointed in the direction TMJ has headed. As a result we have become ever more independent. In spite of this, we have achieved respect, admiration, and positive results with help from many sources who prefer to remain on the sidelines. We have always been confident that like Aesop's Fable: "slow and steady wins the race." JJAMD is on the cutting edge of doing beneficial, comprehensive, and helpful statistical research. This continues to benefit humankind, while not adding to the complexity, confusion, and controversy that has grown and swirls around the TMJ Dilemma.

TMJ Patients Are Still Struggling for Appropriate Recognition and Help. TMJ patients routinely meet with denial, rejection, and, most significantly, the touted shrill misappropriate perception from those professionals who came first with their perceptions, biases, and entrenched positions. Now we see concomitant growth and interest of those who seek to come on board--for whatever their reasons. Meanwhile the TMJ patient population continues to grow--perhaps from the awareness that has been brought on by TMJ patient advocates, and individuals. Most recently it has been from publicity of what has been described as The Blackest Period in Dental History--the TMJ Proplast/Sylastic/Silicone scandal that directly affected a subset of about 26,000 TMJ patients out of the presumed ten million TMJ patients nationally. Congressional Hearings and widespread publicity of this scandal has made it insurmountably difficult for TMJ Patient Advocates to gain attention for the remaining 10 million TMJ patients who were not given surgical implants.

From the 1950's to the present Patients have been further disadvantaged by the Changing of the Guard, and Changing Terminology. TMJ, having been abandoned by the Medical Profession who are responsible for all other joints in the body; and the Arthritis Foundation, which is responsible for all arthritic conditions, has fallen deeper and deeper into the domain of the Dental Profession. In 1982 the American Dental Association [ADA] and the dental research community, adopted the term "TMD" rather than "TMJ." JJAMD believes that by removing the "Joint" from Temporomandibular Joint Disorders, it has subtly allowed a shift in emphasis from stress on the anatomical jaw joints to "mental stress." This, in turn, has lead TMJ patients, into an inappropriate classification as a "psychosocial-behavioral female profile," and a chronic pain condition, where TMJ largely remains today. This notion is currently supported by substantial research grants from NIDCR to fund psychosocial research rather than diagnosis and treatment of a joint disease. Whereas TMJ is a medical condition involving the anatomy affected by mechanical stress on the Jaw Joints, the new emphasis on psychosocial behavior and chronic pain diffuses both the research and treatment efforts into the mental health arena and diverts the scarce funds that should be spent on prevention and cure of TMJ. JJAMD has constantly beseeched the NIDCR to allocate its precious funds to TMJ research and leave the mental health and pain issues to the other NIH Institutes existing for that purpose.

JJAMD has testified and pleaded with all that it is more helpful to the patients to use the original term "TMJ" which clearly identifies TMJ as a 'joint disorder," like any other joint in the body. James Carvelle--who is attributed with helping to win the Clinton Presidential Campaign through his slogan "It's the economy, stupid!" could easily sum up the current TMJ Dilemma "campaign" with a similar phrase: "It's the Jaw Joints, stupid!" Regardless of the terminology and professional biases now assigned to the TMJ Patient Profile, it still boils down to these precious Jaw Joints which connect with the entire neuro-vascular-musculoskeletal-cellular system. One needs only to look at juried journals with articles on TMJ research to notice that it is always the TMJoints that are circled. It is one system--just as with any other Joints in the body. And what a coincidence that--to this very day-- the Temporomandibular Joints are the only Joints that have no Medical Orthopedic Physician Specialty or the AF to claim responsibility or inclusion of these precious joints within their paradigms. Much attention is still focused on females, stress, psychosocial behavior, chronic pain, and now largely on the Silicone TMJ Implant victims. While these elements are all part of the multifaceted TMJ issue, singling them out and focusing in on them to the exclusion of all the other TMJ elements and other TMJ Patients who need appropriate attention, has further stalled equitable attention to all.

All TMJ Patients need and deserve appropriate attention in their journeys to wellness. It is no coincidence that the TMJ Patients are still the "Stepchildren of the Healing Arts." They are disenfranchised, consigned to a "dental-mental" perspective, and further penalized by not having their disorder understood by their families, friends, employers, the health care system, and the media. To add insult to injury they are routinely denied health insurance benefits within health plans to which they are already paying premiums.

A "Subset" of the TMJ Population has emerged in the Form of Proplast/Silastic TMJ Implants Victims. This has been the one exception to the general TMJ Case. Although there is not one universally accepted TMJ specialty nor is there a widely acknowledged accepted epidemiological study, the estimated TMJ population of 10,000,000 is routinely used by the National Institute of Dental Research [NIDCR] based on an epidemiological study done by Dr. James Lipton. Included in this huge population, is a subset of about 26,000 TMJ Patients who have commanded the deserved respectful attention from Congress and Government Agencies. This has been largely due to the extraordinary efforts of Terrie Cowley and Jennifer Hutchinson of The TMJ Association, Ltd., [TMJA] who, in 1992, brought the plight of the devastating results for these TMJ Patients who submitted in-blind faith to have their Jaw Joints repaired and replaced with Proplast/Sylastic/Silicone devices. They learned too late that these materials were never tested for use in the Jaw Joints but were "grandfathered" by the FDA since they had been used for other medical purposes. This is considered the Blackest Period in Dental history. Life is "Virtual Reality Hell" for most TMJ Patients-regardless of the treatments submitted to, sometimes with devastating results. But those who submitted to the "ultimate cure"--these Silicone Patients are facing more immediate life-threatening consequences. Some have giant cancer cells; the silicone breaks up and floats, there is terrible pain and disfigurement. Some of these patients have died and are announced in the TMJA newsletters. Others are bound up in Dow Chemical lawsuits, e.g. the silicone breast implant patients. But even here is a terrible irony, as reported out by the TMJA. The Silicone Breast Implant Patient-most of whom elected this surgery strictly for a cosmetic look--can get up to $300,000 from Dow, while the Silicone TMJ Implant Patients--none of whom elected it for a cosmetic reason, but to alleviate pain and/or dysfunction can collect only up to $10,000. This still shows a prejudice and lack of respect merely because of the name of the anatomy. [Update in June 1999 -- the Institute of Medicine study on silicone breast implants concluded that there is no substantial basis for determining the silicone breast implants are responsible for reported serious illness and immune system disorders--thereby endorsing the position of the New England Journal of Medicine and the AMA. It is very likely that Dow Chemical will use these findings to deny the claims, which have already been approved in the courts.] [ed. note "shame on them."]

It should be remembered, that probably all those 26,000 patients had gone through less aggressive treatment modalities before submitting to implant surgery. They unwittingly entered a health disorder and submitted with blind faith in their doctors who are sworn to the Hippocratic Oath "At least do no harm!" They submitted to a diagnosis and treatment in good faith, believing they were perceived as human beings presenting to a doctor--medical or dental--for diagnosis and treatment recommendation. Instead they were treated with surgery which was not scientifically sound or proven, and their lives have been destroyed as a result.

Similarities & Differences Between JJAMD and TMJA in Mission, Focus, and Style
There are two major and distinct TMJ patient organizations at this time: JJAMD, formed in 1982, and the TMJ Association, Ltd. in 1986. Both TMJ advocacy organizations have Founders and leaders who are passionate, tenacious, hard working. Both foster awareness, emotional support, a national grassroots movement alliances. Each supports basic scientific research, and networking with broader health care and insurance communities, as well as the media. Both are widely recognized for their efforts. And yet, we have very different styles of achieving these same objectives, and basically, we have different focuses to achieve the same missions. Although we have interacted with each other from time to time, our different styles and focuses have precluded a viable alliance, which JJAMD believes has stalled and impeded more dynamic progress in a more timely and meaningful way to The TMJ Cause.

In 1982, JJAMD became the pioneer TMJ Advocacy organization. In 1986, JJAMD's Founders, Milton and Renée Glass, went to Milwaukee to meet the leaders of two newly formed TMJ groups to discuss joining forces. It worked for a very short time. Milwaukee actually became a Chapter of our then TMJ Support Group, Inc. Almost immediately thereafter they withdrew, for whatever their reasons. In 1992, we discussed re-joining forces, but again for whatever their reasons they withdrew. In 1998, we planned to join forces towards a national grassroots movement, but again it failed to materialize.

Good Changes are Happening but Too Slowly
However dismal The TMJ Dilemma is presently, JJAMD sees a growing shift towards improvement in the TMJ Dilemma, albeit much too slowly to satisfy those of us with urgent needs for understanding, appropriate diagnosis, treatment, and health insurance coverage.

Helpful and Hopeful Articles are Appearing Linking TMJ with Allied Disorders This issue includes samples of articles and listing references that we believe are relevant and useful. Such articles are now appearing frequently on the relationship between TMJ and other allied disorders. While some of these are admitting to a TMJ component, others try to ignore it -- probably from fear of being "tainted" by the controversial TMJ disorder. The Director of the National Institute of Dental Research [NIDR], which has officially changed its name to the National Institute for Dental and Craniofacial Research [NIDCR], wrote in the "Journal of the American Dental Association [JADA]," November 1997, that over 80% of those suffering with Fibromyalgia may have TMJ as well. We know, also, that Fibromyalgia is closely linked with Chronic Fatigue Syndrome [CFS] and that a collection of allied disorders have been given the acronym DSS for Disassociated Systems Syndrome by a Rheumatologist Dr. Yuunus. DSS includes disorders such as Irritable Bowel Syndrome, CFS, FM, TMJ and several others. Included, also, are articles or references showing that the heretofore absent Medical Profession is beginning to address the "TMJ Disorder" in their studies.

As you know, there is a glut of information being written on our subject. Most of the literature still evidences a strong emphasis on "women's disorders," psychosocial behavior, and chronic pain. None-the-less there are those who do not agree, although they are not given the space to be seen or heard more visibly. We include such a "letter to the editor" published in CRANIO, in which one Dentist disagrees with his colleagues. As always, we welcome your response and encourage sharing information with your doctors, the media, your family, and friends, and of course with us at JJAMD.