JJAMD's TMJ Consensus Conference Takes Shape

Ten thousand programs and hundreds of press releases of JJAMD's June 22 & 23,1995 TMJ Conference: "TMJ- Implications for Health Care Costs and Public Health Policy," have been mailed. In addition, ads were placed in strategic journals and institutional publications, which have attracted national attention.

Epidemiology. Although many articles refer to the TMJ population as in the millions, there is still no consensus on even how many millions of TMJ patients already exist, nor how many Americans have signs and symptoms of TMJ without being classified as "TMJ Patients" nor does it factor in those other disorders who now admit to a TMJ component, such as Fibromyalgia and Tinnitus. For example:

On June 4, 1992, at a Congressional Hearing on jaw joint Implants, Congressman Ted Weiss made the following statement before the House Committee on Government Operations: "Millions of Americans suffer from a vaguely defined syndrome called Temporomandibular Joint Disorder [TMJ]. Every year, between 500,000 and one million new patients seek treatment..." In l993, an NIDR epidemiologist, Dr. James A. Lipton, reported that "...an estimated 10.8 million people, or 6 percent of the population, experience jaw joint and/or face pains, which are most commonly associated with Temporomandibular disorders" [TMJ]. In 1994 a FDA panel considering classification of certain TMJ diagnostic and monitoring devices was told that the TMJ population was 20,000,000.

Until there is a comprehensive national survey done by, for instance, the Center for Disease Control [CDC], there will continue to be "guess-timates" of just how many millions of Americans are afflicted, as well as a lack of universal consensus on any other aspect of this multifaceted health disorder.

Insurance Coverage: Notwithstanding the fact that millions of people suffer from TM disorders-[and as most of us know]there still exists no general consensus for how and where TMJ patients may access care, no generally accepted medical protocols for its diagnosis and treatment, there is no established public health policy concerning this disorder, and little cooperative effort to educate populations about TMJ. Thus, patients who present with TMJ symptoms are relegated to a clinical netherworld and are ping-ponged between dentistry, traditional and "non-traditional" medicine, where patients are passed from one specialty to another in search of treatment, relief, and mm from their pain, dysfunction, and disability.

Due to the absence of a generally accepted medical consensus for TMJ disorders, patients are usually denied coverage for treatment of TMJ by their medical health insurance because TMJ is mistakenly categorized as a "dental diagnosis." Dental insurance contracts usually specifically exclude TMJ because treatment fans outside of the usual insured dental procedures [e.g. oral prophylactics, orthodonture].

Alternative Medicine: This clinical dichotomy has created a statistically significant population of patients who have substantial unmet needs. Americans, including TMJ Patients, are turning more and more to seek care at their own expense from what is popularly called "non-traditional medicine." Among the many reasons reported is that they find that holistic practitioners see them as whole people, and that their treatments are more holistic, satisfying, and less costly and time consuming.

Ethical Public Health Policy. This Conference will help to promote consensus building towards public health policy on TMJ, to write the appropriate protocols for health insurance coverage, and to allow patients to access all their entitlements ethically and with dignity. Success of the Conference will help to open the door towards resolving the TMJ Dilemma and will be an alternative to the traditional 'March on Washington" promoted by most advocacy organizations. This course of action is tortuous, never-ending, and reaps so little benefit for the time, energy, and cost expended.

Commissioner David H. Mulligan will be the "official greeter" for the large crowd expected to attend JJAMD's TMJ conference in June. Commissioner Mulligan has become a staunch ally of JJAMD's public health mission for several years and therefore indirectly a good friend of TMJ patients nationally. His co-sponsorship of the study which triggered this conference 'Medical Claims Profiles of Subjects with TMJ represents a landmark in public health policy surrounding the highly charged TMJ dilemma.

Mr. Mulligan was first appointed Commissioner of Public Health in 1989 by former Governor Michael S. Dukakis, who will be the luncheon speaker on June 22. He was re-appointed commissioner by Governor William Weld in 1991. His aim is to improve the health status of all residents of the Commonwealth through the provision of quality public health services. As Commissioner, he serves as chairman of the Public Health Council and oversees a Department with a five hundred million dollar budget in support of a wide range of public health programs, four public health hospitals, and a staff of over 2,800 employees.

We hope that Commissioner Mulligan will be recognized for his contribution to the awareness of TMJ in Massachusetts, which is having a rippling affect nationally as well. We encourage readers of JJAMD TMJ UPDATE to write to the commissioner, expressing thanks for a highly placed public health official's concern for the TMJ public health policy issue. His address is: Massachusetts Department of Public Health, 150 Tremont St, Boston, MA 02111.

Loretta McLaughlin Will Bring a Media Focus to Conference

Loretta McLaughlin writes as a regular "op-ed page" columnist for the Boston Globe on the continuing need for US health care reform. From 1992 until 1994 she served as Editorial Page Editor of the Boston Globe.

Earlier, she was a medical news specialist for the Globe. Before that she covered medical news and a broad range of political and general news for other Boston newspapers. At the Globe, she has covered major developments in medicine, medical economics' women's issues and world demographics. She served on President's Clinton's health reform panel.

Recipient of a number of journalism awards and editorial commendation twice by the New England Journal of Medicine, she has contributed to numerous publications and has authored a book. "The Pill, John Rock and the Church; the Biography of a Revolution," published in 1982 by little Brown. She currently serves on the board of the Radcliffe College Institute for Public Policy.

JJAMD notes the increase in the frequency of TMJ coverage at various "dentally oriented" meetings. For example, the "key word index" of the Program for the Annual Meeting of the American Association for Dental Research in San Antonio lists 83 citations of scientific papers for "TMJ and masticatory muscles." The same listing for the 1982 program book showed only 64 citations. While JJAMD cannot comment on the quality of the papers, an increase of 30 percent in the number is impressive.

Similarly, JJAMD attends the annual "Yankee Dental Conference" which is one of the largest such meetings in the country. Each year the number of sessions devoted to TMJ seems to grow. We attended two of the sessions this year, one of which was a half-day and the other a full day. The program for 1995 listed no less then 10 sessions, while the 1994 program showed only 2 sessions devoted to TMJ.

While the growing attention to TMJ by researchers and practitioner/educators is encouraging, as is the reduced preoccupation with the "emotional" and "psycho-social" concentration loaded on the TMJ patient in the past, what is most discouraging is the continued absence of the medical community. There are a smattering of radiologists, and an occasional anesthesiologist or neurologist who have "crossed over," but there continues to be a general lack of interest in the medical community. As Renée Glass of JJAMD comments, "this dearth of interest by medical doctors will continue until widespread medical consensus and medical health insurance is available for TMJ diagnosis and treatment."

"At that time," she adds, "the orthopedists, neurologists and EENT professionals will say - move over Dental Professionals, TMJ Disorder with its multiple medical indications is our responsibility."

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In 1986, Blue Cross Blue Shield of Massachusetts produced a simple public service brochure in conjunction with JJAMD called 'Jaw Joints and the TMJ Disorder.' In 1994, Milton and Renée Glass set out to revise the brochure. It grew to become a 25 page educational booklet, which is now available at BCBS health centers in Massachusetts. JJAMD now has a supply for distribution. In addition to the educational material on TMJ, it contains a "mail-back survey", a glossary of terms, and self-help tips. If you want a copy of this guide, please write to JJAMD, and put "Plain-Talk Guide to TMJ"' on the envelope (JJAMD’s address is on the back cover of this newsletter). This will help us to expedite your order, because we are experiencing a very large demand. Please enclose $5.00. The booklet will be very helpful to patients not only for personal use, but for explaining their disorder to health practitioners, family and colleagues who continue to misunderstand what TMJ is all about.

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Over the years we have heard from virtually thousands of TMJ patients who trace the instigating event of their TMJ to Whiplash. Yet, when a paramedic administers "first aid" to a motor vehicle accident victim it is rare that the thought of TMJ disorder even crosses their mind. In fact, the cervical collar routinely placed on the accident victim, we are informed, could be placed in such a way as to preclude additional injury to the TMJ by producing an unnatural upward force on the TM joints.

We removed a syllabus some time ago from Dr. Don Berry, who is a Dentist on his way to becoming an Osteopath. Dr. Berry puts Whiplash into a context we do not see that often. The following are his words.

Acceleration - Deceleration Injury, Inertial Injury. [Object at rest stays at rest, while object in motion continues moving, until acted upon by outside force]. Front-to-back vs. side-to-side. Later changes symmetry of injury.

The lower jaw lags behind rest of head until it is pushed or pulled to a stop. The condyles are shoved deep into the joint fossa [socket], possibly crushing tissues and blood vessels in there and squeezing the disc out of place. It also flies out of the joint socket pulling and stretching the tissues which hold it and the disc back. On its way forward it may strike the entrance of the temporal bone. On its way back in it may strike the glenoid fossa of the temporal bone. It may bruise itself of those bones, tear ligaments, perforate the disc, tear the disc out of place, or stretch muscles attached between it and the cranium or neck structures. Consider what's also in the area - the Carotid Artery and the Sympathetic Nervous system chain that goes up in its wall, the Jugular Vein, other important nerves of the head and neck, the Sympathetic Cervical Upper Cervical Ganglion [helps control heart rate], the thyroid gland and other important structures.

Entire spine and sacrum is pulled out of pelvis and thrust back in - usually improperly. That's the direct reason why low back pain is so prevalent in these injuries. To this we must also add the secondary interactions. When the mandible is rotated the pelvis is usually rotated [90 percent] and vice-versa. So the back and neck, the body's compensating mechanisms try to even us off. The muscles take a beating trying to do this and still permit us to function.

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Diagnosis and treatment for TMJ Disorders has been charged with controversy ever since the disorder was first documented. Most recently this controversy has flared up with the FDA placed squarely in the middle of the dispute through classification of certain devices.

The devices in question include:

• Muscle Monitoring Devices such as EMG machines. These devices measure muscle activity and are claimed to be useful in diagnosing TMJ conditions.
• Jaw Tracking Machines which track jaw movements in all different directions. These machines are sometime referred to as Kinesiographs.
• Muscle Stimulating Devices such as the Myomonitor, which is said to reduce spasms.
• Sonographic Devices which 'listen" to joint sounds and are said to be useful in diagnosing TMJ.

A group of scientists representing the International Association of Dental Research [IADRI], some of whom are clinicians as well, have testified and written about their view that the devices have not been perfected to a point where they can discriminate between healthy people and people presenting with orofacial pain. They also claim that, in addition, what is being measured often has little relationship to the disease process - and even when it does, it often is measured inaccurately. They argue that while many of these devices are useful in research, they are not reliable enough to use in diagnosis or in the planning for treatment of patients.

On the other side of the controversy are a large number of clinicians, some of whom are members of the American Academy of Head, Neck and Facial Pain, and the manufacturers of the devices. They claim that the devices are reliable and effective in the diagnosis and therefore in the treatment of TMJ. They claim that when used with care by trained practitioners, the measurements obtained or the treatments administered are much better than the alternative of diagnosis and treatment without electronic devices.

At an FDA Dental Products Panel meeting held on October 13, 1994, the panel recommended a classification of Class III which means that the devices are considered to have some risk attached thereto, and may not be marketed to the public without FDA pre-market approval. However, due to certain technical reasons additional hearings will be held in April, prior to final determination by the FDA.

While JJAMD cannot take sides in the dispute, as a consumer advocacy organization we believe that it would be helpful to survey our mailing list to determine what the experience has been of patients. The leadership of IADR has asked us to do this, but that should not be viewed as favoring one position over another. Please be sure to fill out the survey in this issue and return it to JJAMD.

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From what could have been described as a "dearth" of TMJ articles and publications a few years ago, we now see a "glut" of such information. JJAMD recognizes that some advocacy newsletters routinely publish articles on their disorder for patient information purposes. Sometimes, these are original pieces such as "Ask the expert," etc. At other times they are reprints of articles published elsewhere, such as in "scientific" journals and selective writing, as opposed to the whole body.

We find that publishing so called 'scientific' material in the UPDATE could be counter-productive for the patient because of the widely disparate opinions and questionable science. For example, a few years ago we could have been recommending L-tryptophane for a supplement to help sleep. We also probably would have been reproducing articles praising occlusal adjustments as the answer to TM disorder or the remarkable early success of certain jaw joint implants. Obviously, this would have been harmful, and causes us to wonder about the articles we see in other Advocacy Organization newsletters, which while well intentioned, always carry a disclaimer.

An example of the glut of material is our current downloading of MedLine to our computerized TMJ library. In 1994 there were over 500 references for articles under "Temporomandibular joint Disorder" alone.

Some readers have asked where they can access TMJ information. For those who are computer-equipped, we recommend accessing MedLine for references and abstracts on scientific literature on TMJ. Search under "Temporomandibular joint disorder" or " Temporomandibular joint dysfunction."

For those who are willing to pay the $69 annual subscription cost, we recommend the bimonthly publication TM UPDATE, published by Anadem Publishing, Inc, 3620 North High Street, PO Box 14385, Columbus, OH, 43214. This publication provides abstracts of current published works on TMJ. A few years ago they attempted to include all TMJ materials, but now are only able to abstract some chosen by their editorial board, due to the proliferation of published works. They also include a bibliography by category.

There are two primary journals covering TMJ:

Both publications are highly technical, but both contain frequent editorial opinion which non-practitioners could find interesting. Either journal can be found in most medical libraries, and it is possible in some cases to request your local library to subscribe to the journals, or ask your practitioner to lend you a copy.

Most dental journals, and even some medical journals, write on this subject at times. A reference librarian can help in this search.

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The appearance of Dr. Daniel Eskinazi, DDS, Ph.D., will add the dimension of "Alternative Medicine" for the first time in a non-clinical TMJ Conference. Dr. Eskinazi has been the Deputy Director of the Office of Alternative Medicine (OAM) since January 1993. While in this position, he developed the first Request for Applications (RFA) on Exploratory Grants for Alternative Medicine published by the OAM This announcement led to the awarding of the first grants administered by the OAM. Dr. Eskinazi also conceived the Field Investigations program, coordinated the effort to establish a comprehensive database and clearing house on alternative medicine, and is responsible for shaping the international collaboration program of the OAM. To support the above concepts, he has been organizing several conferences and workshops, in particular on acupuncture, databases/clearinghouses, methodology, and herbal products.

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JJAMD is the exclusive provider of TMJ information under contract, and has a number of separate leaflets providing information on all aspects of TMJ - including even a patient survey, which can be filled out and returned to JJAMD. During the 3rd quarter of 1994, the database was accessed 3,668 times, of which 1,419 elected to have the information printed out. This compares to the database being accessed 1,727 times in the 2nd quarter of 1994, or a jump of over 200 percent.

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TMJ patients are typically in need of many and often very diverse diagnoses and treatments in their journey to be well. Because of this, the TMJ Patients are vulnerable to the suggestions made by their health care giver's. Among these diagnoses and treatments to which the TMJ patients routinely submit are a battery of psychological tests and many devices, electronic or otherwise, which hold out promises to help make a better diagnosis, or to offer immediate or long-term relief of pain, help stimulate the muscles and duration for better function, or in any other ways that the health care giver deems necessary.

Some of these diagnoses and treatments are being questioned by the FDA which is looking into the classification of certain Electronic Devices. A Hearing on this matter was held in October 1994 and another is scheduled in April 1995.

JJAMD, as an advocate for the TMJ Patients, believes it is urgent that TMJ Patients be informed of what is going on in the TMJ World through the mechanism of our JJAMD TMJ UPDATE.

JJAMD also believes, when informed, the TMJ Patients are better able to help themselves, whether the information is complex or uncomfortable to absorb. We believe, you, in turn, should be proactive in order to access appropriate care, insurance coverage, and all your other rights and entitlements. TMJ is still so controversial because of the lack of supporting evidence of what is best for you, lack of protocols, still no recognized specialty, no practice parameters, no comprehensive whole body research, and no commanding will of American society to deal with TMJ as a legitimate medical health disorder.

This is an opportunity to help yourself through filling out and sending back the survey on pages 7 and 8. On the one hand there are those TMJ scientists and practitioners who are taking a stand on electronic devices that are being used too routinely on many TM Patients, and which could be contributing to unnecessary time, energy, money, and spiraling health costs, and adding to the controversy about quackery, which stalls the opportunity to be seen, treated, and get insurance coverage. On the other hand there are a substantial number of clinicians and the manufacturers of the electronic devices who feel they are a valuable addition to the tools necessary to diagnose and treat TMJ. They point out that in every other field of medicine, electronic devices are used routinely and effectively, and that their devices have been used successfully on patients.