JJAMD's Founder Describes Her Personal 20 Year Battle With the TMJ Dilemma
Massachusetts Department of Public Health Writes
About Focus on TMJ in School Children
FROM ONE PATIENT'S PERSPECTIVE - A PERSONAL EXPERIENCE
by: RENÉE GLASS, Founder of JJAMD
I am constantly asked what motivated me to found JJAMD. As is often the case with advocacy and educational health foundations, JJAMD was born out of my own personal health crisis. After suffering through five years of an iatrogenically induced health nightmare, I was diagnosed with "TMJ" in 1981. Often, a diagnosis brings some relief, as patients can now access support and educational resources in order to better understand their illness and make informed decisions about care. In a search for such resources, I was disheartened to find that none existed for the TMJ Patients. It was at that moment that I became an accidental activist. There was a void and it needed to be filled. What I naively started, with the help of my husband, Milton, was a local outreach and self-help support program, which quickly mushroomed into a national advocacy movement. And it all started with a toothache!
There were other motivational factors as well. For one, we felt that Milton's position in the Boston health and corporate communities that had national outreach would expedite and help bring attention to this orphan disorder. Additionally, we had interest from others who could help this new and needed organization. Finally, we had the desire to salve our consciences for having submitted both our children to orthodontia with bad outcomes. The parallel with my own story and our children's story is that we did so without any knowledge, fear, mistrust, and we submitted without any questioning, of why, were there any alternatives, or possible consequences.
In January 1976, 1 had what appeared to be my first ever toothache in the area of my last lower molar. Immediately, I went to see our local Cape Cod Dentist, who had been treating my family for many years. He was a kind and attentive practitioner, who went so far as to personally perform our quarterly cleanings. He listened to my current complaint, took x-rays, and "just saw nothing." He said it was "incidental pain" that sometimes happens, and would go away. By March of 1976, 1 could no longer tolerate that "incidental pain." Again he took x-rays, which produced his first diagnosis-"he just saw nothing! Never having had a problem or fear of Dentistry before, I was innocent and uninformed, and had no reason to question or disbelieve his diagnosis. He did not refer me for further diagnosis. Frankly, referral was not in my thought process, as I was steeped in the tradition of accepting a doctor's word is gospel, not to be questioned. Rather he "deferred" me as having a transitory pain problem, e.g. doloreaux, neuralgia, or the like. And sent me on my way.
Having been blessed with excellent health my entire life, I knew very clearly that something was now amiss and I could not accept a "just live with it" attitude. At this point we stepped up our efforts to get to the bottom of my problem. Milton was already Vice Chairman of Massachusetts Blue Shield, so it was possible to gain immediate access to the top health care professionals in Boston, which is often referred to as "Mecca of Medicine." I was examined by a Blue Shield colleague, an ENT Specialist, who "saw no ENT problems," but out of concern, he did refer me, to another Blue Shield colleague, a Neurologist at the leading hospital. Though he saw nothing abnormal during his routine neurological tests, he ordered elaborate head x-rays, perhaps suspecting a brain tumor. The intensity of the x-rays actually burned my neck, but at least they provided the first definitive opportunity to view my problem more peripherally, which the original dental x-rays obviously did not. Compassionate and concerned, the Neurologist said: "Today the world's top Oral Surgeon happens to be here. Since your pain is specifically centered in your jaw, would you mind if I have him examine you and give his opinion?" The Oral Surgeon first looked at my country Dentist's x-rays and said: "These x-rays are too dark and they don't go down far enough, but I think I see the problem." Through his skilled eyes and by using the much better x-rays, he "was able to see the problem" that I had been experiencing for three months. Despite his preeminent position he was not arrogant, and he called in one more Dentist. She looked at the x-rays and independently confirmed his diagnosis--an abscess in that very same tooth about which I initially complained. This meant that for three months I had been living with something very specific, very painful, and potentially dangerous--a "'hot" abscess. The Oral Surgeon injected Novocain into the area and the pain magically disappeared. He would also become an important adjunct to my future care, as will become evident.
So, this was a situation of a missed and re-raised diagnosis, deferral, more diverse referrals, and lots of misspent energy, money, and time to try to address what I suspected in the first place--a toothache. The problem seemed so solvable. Little did I know that my "Odyssey into Iatrogenic Madness" was about to begin.
I was immediately whisked over to the preeminent Endodontist in Boston. He treated one of the three canals and sent me home to Cape Cod, a 72 miles trek. I came back on Tuesday, and he did the second canal. As you all know, New England is famous for " Nor’easter" storms. Sure enough, my tooth and my new dentistry both got caught in a "Nor’easter." First, because the city closed down and we couldn't get back to this Dentist or to our home on Cape Cod, we stayed overnight in a Boston hotel. Secondly, by the time the Novocain wore off late that afternoon, I realized that I could not close my mouth. Having, no immediate fear of the possible consequences, I remained stoic. The next morning I went back to the Endodontist's office. Because he was not working that day, I was examined by his associate. Admitting to me that the tooth had been filled too high, he began his treatment. When I realized that part of his treatment was to "grind" off some of the dentition from the opposing "good tooth," I finally summoned the courage to question him. With hands on his hips, he said: "Do you want me to help you or not! -There is no such thing as good teeth and bad teeth in these situations." So, like any good compliant patient," I let the "good doctor" do his work, and we returned to Cape Cod.
By Friday, the tooth fractured. Then I got perhaps more misinformation. I was told by their Cape Cod colleague that the tooth had to come out immediately. Perhaps if even a part of that tooth had been saved it would not have set off the chain of events which led me to start the Foundation and I would not be speaking here today. That is the truth--the truth of a strange Odyssey of a tooth lost through misdiagnosis, mistreatment, and misinformation. I could not go back to my country dentist, nor could I return to the Cape Cod Oral Surgeon who told me that his work was done and I could not be his ongoing patient. So now I was left with a missing, tooth and no Dentist, but no pain or dysfunction either.
Next, we went to Milton's company physician, who was affiliated with a local University Medical Center. The door was immediately opened to the Dean of the School of Dentistry, who assigned me to a Dentist who had been his star pupil and who was working in the Faculty Practice at that time. I still had no knowledge, fear, or assertiveness. I was not prepared for the worst which was still to come. I was ignorant and they were arrogant. From just this one toothache, I was now informed that a whole mouth restoration, which included grinding down my teeth, was required. Strangely, the lost tooth which brought me to the Dental School in the first place was never addressed. All my silver came out and in went deeply carved and grooved expensive gold onlays. As subsequent events would prove, my occlusion was "restored," but in the Dentist's overzealous quest for his ideal of perfection, my vertical dimension was destroyed. My occlusion torqued and became protruded. My jaw joints and occlusion were "jammed-in" to an untenable physiological position which caused a structural facial collapse. I became an iatrogenic victim.
Subsequently, while I was never in pain, I started feeling "heaviness" in my jaws and Joints. I was unable to properly open or close my mouth to chew or swallow. I was gagging and food was coming out of my nose. My weight started to drop, I looked emaciated, stooped, and sickly. I had lost significant body weight, my lips became pursed into a very protrusive position, and the blackness under my distorted eyes defied facial makeup. I looked and was more seriously ill than we realized. Our Blue Shield Medical Director became concerned when he recognized how sick I looked, and referred me to an Internist at another Medical Hospital. He told me that I was hypoglycemic and referred me to a Nutritionist who told me that "dying from malnutrition is not a pleasant way to go." I was told to "eat hot fudge sundaes if nothing else would go down." Eventually, I was able to handle pureed and liquefied foods, which were the only alternative to starvation. My metabolism would never recover from this trauma and my entire system, appearance, and the quality of my life was forever changed. The change in my physical appearance was so radical, that the Pedodontist included my "before" and "after" pictures in his textbook.
Progressively my condition worsened. In 1981, suddenly a foreign name and acronym appeared to describe what had happened to me. I was told that had "Temporomandibular Joint Disorder," or the shorthand term "TMJ." While I was entering an ancient disease entity, which had been lying, dormant and ignored and abandoned by the medical profession for so many years, it was to clash with a new name and image "TMD" which was not invented by the Dental Profession until 1982!
Basically you can now understand what happened. I did not "self-grind" my teeth, and I was not a "psychosocial instigator of my illness," as most women TMJ Patients are accused under the rubric "TMD." I believe that these popularly touted newer designations are a "smokescreen" for failed treatments and a fertile field for new and unscientific research. I subsequently met other patients who had similar treatments and experiences, during the same time, in the same facility, and by the same Dentist, and with similar disastrous results. We also met or heard from others from far away with similar "war" stories. The acronym "JJAMD" for our organization is really by design. My jaw joints had become "jammed," were flattening, and I had no free space for good function, but I was without pain. Now I was even being told that maybe I might need "Joint remodeling" through surgery. Fortunately, I did not go that route. By this point in my ordeal I had reached a greater level of sophistication and was not prepared to blindly submit to an unproved, invasive, and intractable procedure.
By 1979 1 had become an official "Doubting Thomas." I started to ask questions, however, I did not really know the right questions to ask. I continued to pay the price for my innocence and vulnerability and from the arrogant insistence of those who implemented unproved "trial and error" treatments. Ultimately it led me to other Dentists, some of whom did not want to take on my "awkward" case. I was damaged goods, and they did not want to accept the responsibility for trying to straighten out the "no win" mess created by a member of their profession.
With the help of my adjunct Oral Surgeon, I was next placed under the care of a Dentist affiliated with another Boston Dental School, who tried to smooth down the deeply carved grooves in my newly placed on-lays. His treatment also proved unsuccessful for a number of reasons. First, he was disadvantaged by the fact that the previous Dentist would not turn over my records to help him help me. Then my dental records and study casts were mysteriously "lost" by the original Dental School. Therefore, it was not possible to know where my Occlusion was before the original restorations were begun. In 1978, Massachusetts law did not require a Dentist to maintain or turn over dental records. JJAMD subsequently sponsored legislation, which successfully reversed this unethical and unprofessional practice. My medical history and patient identity were also "mysteriously" erased from the School's computer. Subsequently and sadly, history repeated itself, for the second Dentist and his Dental School also "mysteriously lost" my records.
Down on my luck again, my continuing Odyssey now led me back to my adjunct Oral Surgeon who had discovered my abscess in 1976. This time he referred me to his own Dentist, M.P.H., who was the Prosthodontic Department Chair at yet another leading Boston Dental School. He examined my mouth in his private office, and said, "I would prefer not to become involved in your case, but I cannot leave you as you are now. Your onlays are so deeply carved that they have trapped you into an occlusion resembling a shut bear trap. You have no freeway space, and tremendous pressure is being exerted on your jaw joints." An ethical and compassionate man with a Public Health degree, he dedicated himself to helping me to the best of his ability. He then proceeded to remove all of my "new" onlays and put me into temporaries. Ultimately, I was given onlays that provided me with some freeway space necessary to function. Unfortunately, and for the reasons already stated, he was unable to restore the height of my occlusion to where I had been functioning perfectly before my treatment at the first Dental School. He is still my Dentist of Record, and my nightmare was and is still his. It is only through his tender-loving-care, and the tender-loving-care of several other practitioners I inherited during this lengthy and hellish journey, that I am able to be here today. My Dentist searched for and called in a Physiologist and the Director of a TMJ Clinic to help me. He literally sat and watched me try to eat and swallow. Then he designed and fabricated new splints to help fill my vertical void, while disoccluding the jammed jaw Joints which I would allow me to chew and swallow. He "taught" me to eat all over again. My Dentist then called in a Pedodontist who fabricated an "adult" version of a child's bionator to help compensate for the overly retruded position I had been put into. New splints were then made to compensate somewhat for the vertical dimension that had been lost through dental grinding. Because I could not tolerate the hard "one-size-fits-all" splints, the Physiologist created special soft thin splints to cover both the upper and lower teeth, thus giving me enough height to at least function. These are now called the "Glass split-level splints." He painstakingly tested the efficacy of these splints by giving "tooth-by-tooth" kinesiology testing, and by using an EMG instrument to test my swallowing ability. I must emphasize that my bad luck had now changed to good fortune when I belatedly received humane and dedicated health care that so many compromised patients have been deprived.
I wear my "split-level" splints all of the time and will for the rest of my life. Again, one of the lessons we have learned from my case is that "Pain" does not go hand in hand with "Dysfunction." In my case pain was never a factor, but dysfunction almost killed me. There are a variety of coping mechanisms and drugs to deal with pain, but when you suffer a loss of motor and sensory activity, you have actually lost a part of yourself, even if you learn to cope and adapt with the loss. Since I learned first hand the difference between pain and dysfunction, I am qualified to advocate for a "truer" Profile of a TMJ Patient. This I is why I am so impatient and angry with the undue emphasis imposed on the TMJ Patients as mostly "Chronic Pain Patients with a self-imposed Psychosocial Behavioral cause." There are many others out there who are suffering with dysfunction only, or with both pain and dysfunction, but not pain alone.
Once I was able to function again, I became determined to try to help others who were wandering in this endless forest of confusion and despair. That is why JJAMD was born in 1982. We placed a small public service announcement in a local newspaper to announce two back-to-back meetings to discuss TMJ. We were flooded with inquiries and had good attendance by both professionals and patients. The rest is history. Nothing, however, prepared us for the "strange world of TMJ" we were now to enter. It has dominated our lives for 15 years, but it is a mission that cannot be abandoned as there is still so much work to be done. Trying to prove "The TMJ Case" is like going uphill backwards wearing a millstone around our necks.
The mission of JJAMD is manifold, but Prevention is our ideal. In addition, our mission includes advocacy for appropriate diagnoses and treatments through careful quality research and education for the professionals and the public alike.
It is essential that our mission is realized in order to create order out of chaos and to legitimize the Jaw Joints and the TMJ Disorder as a Medical entity. Until this happens, and in the absence of a consensus on an accurate perception of the patient's profile, classification, correct diagnosis, and treatments, we can only dispense basic common sense self-help advice with underlines and warnings and written materials. We have compiled a database and a library. We network constantly with patient and professional organizations and with government agencies. We publish and widely disseminate. educational materials. We have attracted pro bono research studies in which we participate, two of which are now published. We are on E-Mail, and on the Internet at Forsyth Dental Center, and Massachusetts Blue Cross Blue Shield and their kiosks, and on the Internet as well as in kiosks under the auspices of Medical Strategies Inc. "Healthtouch," a database supplier of free interactive health information. We are listed in many health resource publications. Milton and I personally facilitated self-help support groups for eight years, and we have sponsored free diverse professional lectures and seminars for the public. We have organized and conducted our own TMJ Conference with 35 outstanding Panelists from a wide cross section of public health, law, academia, dental and medical clinics, ethics, and epidemiology.
Yet 14 years after our start, the hardest thing JJAMD faces is telling Patients that we cannot provide referrals or specific medical and dental advice. Unfortunately, by the time we hear from many TMJ patients, they are already in serious crisis. While our mission has more recently been focused on promoting the Prevention of the TMJ Disorder, with assistance from the Massachusetts Department of Public Health, we are realistic enough to know that prevention advice will not help the millions of TMJ Patients who already exist. If it can help others from unnecessarily falling victim to TMJ, then our efforts will have been well spent. In the meantime, we do supply information that allows patients to make critical decisions about their health care options from an informed base. We encourage them to ask questions of their health care providers: "Why is this procedure being recommended for me? What is the alternative? What are some possible side effects or consequences?" We encourage them to ask the practitioners for written materials on proposed procedures. We encourage them to get at least 3 independent opinions before they submit to any irreversible treatment, and we encourage them to join or form a self-help/support group and to attend lectures in their communities relevant to pain and/or dysfunction, arthritis, CFS, Fibromyalgia, MPD, or others, because they overlap with many of the same issues of TMJ. I wish I had the benefit of an organization such as JJAMD when I was searching for help.
Because I did not know how to ask the right questions, I paid the price. I did not have the requisite fear, and it actually became life threatening. I do not want that to happen to others, and this provides the impetus to keep JJAMD alive, although we are presently understaffed, underfunded, frustrated and overwhelmed. The message I bring to the Patients is that, in innocence, people are submitting to invasive procedures out of caring and trusting. Who would want to hurt them? But it happened to me. I do not believe in crying over spilt milk. I believe in translating what happened to me into helping others through our JJAMD Foundation.
The message I bring to the Professional audience is that I hope this meeting will provide a learning and networking opportunity. There are too many iatrogenically caused cases of TMJ. There are too many missed diagnoses. Perhaps these occur because the Practitioner is not looking at the big picture or not hearing all that the Patient is really feeling, and experiencing. They know their physiology better than anyone; their concerns cannot be trivialized. Therefore, I implore You to take very seriously what the patient is feeling and saying. We, as a layperson advocacy organization, are here in the trenches with the real people. You Practitioners must see these patients some of the time. We hear from them all of the time and they are desperate. We always like to start and end our lectures by reminding everyone that we are all patients at one time or another and that it is the responsibility of all of us to search and report out the truth. Remember, when it is your turn for health care, you know you deserve the best intentions, education, and skills from your doctors regarding diagnoses and treatments. What happened to me could happen to you or your loved ones tomorrow because in an attempt to take care of yourself, you may be too quick to trust and submit. It is, in its own way, motivation to learn that we all have to care about each other. Working together can help make a difference in the whole health care system and the quality of our lives by doing what is right.
Renée Glass is a Co-founder and President, along with her husband Milton, of the Jaw Joints & Allied Musculo-Skeletal Disorders Foundation (JJAMD). She has organized and conducted self-help groups focused on the dilemma of TMJ since 1982, developed an extensive library devoted to TMJ and related health disorders, actively publishes a quarterly Newsletter devoted to TMJ education, advocacy, research, legislation, and clinical topics in addition to actively running the Foundation. Mrs. Glass has published numerous patient-oriented materials focused on understanding the TMJ disorder/dysfunction and the dilemma which surrounds the health issues, health insurance coverage, health provider involvement and media coverage of this complex and generally misunderstood health problem. She is often called upon to give oral testimony at both the state and federal level concerning TMJ. At Northeastern University Mrs. Glass is an Executive-in Residence, serves on the Wellness Committee, and is director of the Goldberg Center for Social Responsibility. She serves as a director of the "Ethics Foundation " of Boston. Mrs. Glass has completed course work at Tufts, Northeastern University, and University of Massachusetts.
THE ABOVE SPTECH WAS DELIVERED AT A TMJ SEMINAR 4/9/97
PREVENTION OF TMJ: FOCUS ON SCHOOL-AGED CHILDREN
The following article was prepared by Oral Health/Public Health
professionals under the auspices of the Jaw Joints & Allied Musculo-Skeletal
Disorders Foundation [JJAMD] through our participation with the Massachusetts
Department of Public Health. JJAMD's mission is to bring awareness of the jaw
joints [TMJ] to the public at large, and to help in the prevention of this common
disorder, known as "TMJ" [TemporoMaildibular Joint Disorders]. This article
was written for publication in the "Massachusetts School Health Newsletter."
It informs School Personnel about how they can help to prevent TMJ disorders
in students through awareness and detection of early signs and symptoms.
The disorder to the TemporoMandibular Joints [i.e. in layperson's term Jaw Joints], is usually referred to as "TMJ." TMJ disorder can spread pain and dysfunction throughout the entire body. This medical disorder is one of the most pervasive, least understood, and most controversial health disorders in existence today. TMJ is now also acknowledged as a component in other health disorders.
The following are common sights around the school yard: a student misses a catch, and grimaces; another child impresses friends with her gum-chewing skills; a student is seen biting his lip nervously; another runs outside without hat and gloves on, and immediately tenses and clenches. In each situation, the unique Temporomandibular joints [TMJ] are being utilized and often misused in innocence. Heightening awareness and education can prevent TMJ injury in schoolchildren. This target population has the greatest potential to develop attitudes and habits that will ensure the long-standing health of their jaw joints.
Why focus on the TMJs? They are the most frequently used joints in the human body. Every time we talk, swallow, or chew, they are being used. They act as a pathway through which all motor and sensory nervous information travels between the brain and the spinal cord. They are in close proximity to the ears, eyes, nose, throat, sinuses, muscles of mastication, and cervical spine. They are unique joints because they must work on both sides at the same time; one side is dependent upon the other side. Trauma during stages of growth may leave permanent damage [e.g. facial asymmetry]. Injury to these joints is complex in its etiology. Efforts must be made to identify and remove risk factors. Chronic TMJ can spread pain and dysfunction throughout the entire body and can often result in depression and anxiety, which are not uncommon sequelae to initial injury
How can you help? Early screening and detection of TMJ problems increases the likelihood of successful interventions. Observe those students displaying any of the "P's" as below:
Parafunction - an important etiologic factor! Look for signs such as grinding or clenching [AM and PM], chewing on pencils, gum, and nails, toungue thrusting, lip biting, playing musical instruments.
Posture – avoid head forward [e.g. while studying], proper carrying of book bags, sleep positioning, breathing, telephone [teens!].
Protection – intra-oral sports guards, helmets, proper diet, exercise, chew evenly, avoid hard chewy foods and oversized sandwiches.
Personal injury – contact sports, car accidents [including airbag injuries], play ground accidents, tom-foolery blows to the head and face, abuse, falls.
Pain and dysfunction – audible pops and clicks, jaw locking, range of opening [normal is approximately 2 to 2.5 finger widths] and closing jaw, cheeks, temples, chewing, headache, earache, yawning, talking, jaw muscles, bite problems, smiling, laughing.
Pressure - classes, homework, peers, family, lifestyle.
Pre-existing conditions - juvenile rheumatoid arthritis, osteoarthritis, lupus, migraines, depression, Tinnitus [ringing in the cars], allergies, orthodontic work, Joint hyper- or hypo-mobility, lyme disease, sinus, viral infections [ i.e. mononucleosis, mumps, measles], hereditary abnormalities.
Finally, early detection of the "P's" in school children will go far in the overall prognosis of TMJ. In many adult TMJ cases, direct cause has been attributed to an initial childhood factor [e.g. trauma. Statistics reveal that, when detected early, successful treatment of TMJ is most likely. This has many economical benefits, notwithstanding the physical ones. Furthermore, the treatment modality at this stage is most likely to be conservative and reversible.
If you notice any of the above signs and symptoms, be aware and informed. If the student presents with pain in the jaw joints or dysfunction, e.g. inability to open the mouth freely, or difficulty in chewing and swallowing, refer him to a primary care health professional who is qualified to diagnose and treat the TMJ disorder, and/or to refer the patient to an appropriate clinical source. Your early intervention could aid in prevention of further injury and create a healthier outcome for the future of these kids.