Can a TMJ disorder be fixed?
By Ann McCulloch | Part 1
I have been treated for TMJ disorders. My professional training is not in dentistry.
My experiences started out with being told by a dentist that I had TMJ. Today, two orofacial pain specialists are my business partners and I have learned about the field through them, and other dentists. Over the last ten years, I have attended meetings, workshops, and presentations made by dentists with different specialties; it is worth noting that few of the experts have been TMD patients themselves.
The views shared here are strictly personal and the target audience for this article is patients who are trying to access appropriate care for jaw-related conditions. I encourage readers to recognize that there are 30 different classifications, ranging from common to complex, of TMJ-related disorders, and most of the medical and dental literature and discussion is focused on “chronic” TMDs.
In healthcare, this means a condition that has lasted longer than six months. A report on TMDs published in 2020 by the National Academies of Sciences, Engineering, and Medicine (NASEM) points out “there is no general agreement regarding when the acute phase of a painful TMD ends and when chronic begins. The consequence is that the end of acute TMD pain path is most often indeterminate.
Table of Contents
- Journey as a TMJ Patient
- Comparing TMD to my Ankle Injuries
- Some Dentists make Confusing Marketing Claims on Websites
- Patients Should not have to Self-refer
- Improving Care for Individuals with TMD
- Benefits of Low-cost Trial for TMD
My Journey as a TMJ Patient
Honestly, I made some bad choices when I look back over the years at how I approached my own chronic hip pain and jaw-related issues. For twenty-five years of my professional finance career, I moved every five years to a different part of the country. Based on mostly word of mouth, I found new medical, dental, and alternative medicine providers.
Based on what was available, I tried different approaches to addressing chronic back pain. I was told by a dentist that I had TMD, and this opened the door to a range of dentists, orthodontists, TMJ dental specialists, ENT, chiropractors, craniosacral therapists, Hellerwork, Structural Integration, acupuncture, and other types of treatment providers.
Did I know what kind of TMJ disorder I had? (Not really) Did I know what to look for and when to seek follow-up care? (No) I surely didn’t know how to pivot between dentists wanting to move my teeth (because I was told that the prior dentist prescribed the wrong oral appliance) and alternative medicine providers wanting to structurally realign my neck and/or cranial bones.
Each time I moved I faced a similar dilemma – how to respond to a well-meaning TMJ dentist offering to “fix” me with their special modality. There are treatments and measures that help you to manage the symptoms and improve a TMJ disorder to an acceptable level. The objective to be “fixed “however, is often unattainable if you have a complex, multifactorial condition or with age and life stress, the joints become less adaptive and what was previously improved, again needs to be managed.
Comparing TMD to my Ankle Injuries
My TMD journey is muddled, compared to my experience last year when I broke two bones in my left leg and subsequently sprained my right ankle. In both cases, I was examined and initially treated in Urgent Care. For the broken leg, the doctors wanted to re-examine the severity of the fracture a week later. During that week I was to focus on pain control, swelling, and a temporary cast.
Conveniently most of my medical care was provided by a range of orthopedic specialists, physician assistants, and physical therapists all within a highly regarded HMO in California. All my medical records and imaging results have been accessible online. I can easily schedule a phone or telehealth consult, an informative class or evaluation by my primary care provider, or another PC available more quickly. Coverage for treatment for the fracture and the sprain was available and the patient education was extremely helpful (as in I read each piece of instruction carefully because I wanted to recover as much normal function as possible).
Throughout the healing process, it was explained to me the difference between an expected recovery period for fracture and sprain. My recovery was going slower than expected because of the complexity of the fracture, and my routine was totally thrown off course during this period, but I had to accept this reality.
Challenges finding the appropriate TMJ diagnosis and treatment
Not so for a temporomandibular disorder! This level of care and jaw pain patient education may be available for some patients when they have an acute TMJ jaw injury. However, in most cases, care is available to you only if you are lucky to have a skilled dentist who has time to work with you, won’t try to overtreat your condition, or if you live in a European country with socialized medicine.
Often one of the biggest challenges facing an individual with a TMD or TMD-related symptoms is finding the appropriate diagnosis and treatment, particularly given the divide between medicine and dentistry in the United States and much of the world—a divide that profoundly affects care systems, payment mechanisms, and professional education and training.” – NASEM
Some Dentists make Confusing Marketing Claims on Websites
I know a subset of dentists who will identify a mild sprain/strain of the jaw and can offer treatment analogous to an ankle sprain, monitoring progress to determine whether extensive treatment is necessary. But unfortunately, I am not sure how to tell a patient how to find these dentists. It should be easy to find a dentist ready and willing to treat a common injury or inflammation to the jaw, but a recognized gap in dental school is the lack of training on TMJ anatomy and the orthopedic nature of treatment (i.e., options other than treating the teeth and occlusion.)
Patients Should not have to Self-refer
I know a subset of dentists who are diagnostically skilled in helping patients with complex conditions. But it seems too often that the patient self-refers to an expert and often this means relying on word of mouth or internet search through websites that mostly say the same buzzwords (such as conservative, minimally invasive comprehensive treatment options.) HMO’s rarely have treatment options for temporomandibular disorders because they do not have dental experts on staff, in most cases.
Relying on your medical insurance for access to care can honestly mean long delays. Or you may face treatments covered by insurance that may not fit your condition. This may leave you to choose between a treatment that is a covered benefit versus a treatment that is recommended to be more appropriate.
The second reason why access to care for TMDs is challenging is that most people wait to pursue treatment for jaw pain. They wait until the pain is too distracting, or unbearable or they can’t chew, swallow, sleep, or function normally. So, let’s say your condition is more than mild but not as easy to recognize as an ankle sprain or leg fracture. How should you prepare to find the right dental provider?
Access to care for TMDs:
- Who do you see?
- What will it cost and how long will it take?
- Why is it so difficult to navigate within the dental and medical establishments?
- Recovery: How good is good enough if you have a TMJ disorder?
Questions people with TMD should ask themselves:
- How much money are you willing to spend?
- How many appointments are you willing to go to?
- How many tests and trials are you willing to be subjected to before you give up and say “fix me!”?
- How many opinions are you willing to search out, if necessary?
- How long can you wait?
- What are you ruling out (i.e., no pain medication, surgery, orthodontics, etc.)?
The answer to all these questions of course is “it depends!”
Consider the scenario if it was an ankle sprain, you would rest and take NSAIDS at a minimum. You wouldn’t expect to run up a hill. It’s likely that you wouldn’t complain that the doctor took too long to diagnose you or charged too much. It’s also likely that you wouldn’t second guess whether you went to the wrong provider because your internet research might have missed a key point, or you didn’t ask the right question.
By the way, who has time to research this when you are in pain, or you read terrible things about the dreaded TMD?
I wish finding appropriate care was as straightforward as a treatment for an ankle sprain/leg fracture example. My experience last year was painful and involved significant self-care, but it wasn’t stressful because I didn’t have to decide what to do and doubt my decisions or the care of the providers. This is just one aspect of the stress of being a patient.
What Stress Factors do TMJ Patients Commonly Face?
- Financial. If you are not given something to try first or the treatment plan is not scheduled in phases (if you must make a $2,000 to $10,000 decision on an all or nothing basis) this is stressful.
- Physical. Many TMD patients have co-existing health issues and TMD is an aggravating factor. How do you find a provider that also understands how you are being treated for other medical conditions and can help you coordinate and customize care?
- Level of effort. Some treatment options only work over weeks or months and necessitate many appointments, possible uncertainty, and consistent effort to master self-care (like a physical therapy routine.) It is stressful when it is time-consuming, may require lifestyle changes, or you may not know for some time whether you are getting better or not.
- Biomechanical. This term is used to describe a structural problem in a patient’s physiology – such as a disc displacement, arthritic joint, or dysfunction in jaw function. Dentists and oral surgeons trained to evaluate a biomechanical problem with TMJ function often have imaging and jaw tracking technology to assist in their diagnosis and explanation to you of their treatment recommendations.
Controversies about TMJ treatment options.
It is stressful to be the patient, however, because the treatment that addresses a biomechanical condition works well for some in reducing pain, but not always. Your physical appearance might also change – that makes the decision stressful! It seems easy these days to get knee replacement – why is it so difficult to be certain about jaw repositioning and surgical options?
Well, let’s admit it, why are there so many different opinions, depending on what type of dentist you go to? If the treatment doesn’t work, what will this dentist recommend as the next option? Should you talk to other patients or not?
This is a 2-part article. I want to wrap up Part 1 with these suggestions on how to think of your own personal needs so that you and your medical/dental team identify what might be best for you. In Part 2, I will highlight different medical and dental philosophies and approaches to TMD care.
Patient-Centered Care for TMD
You may be asking, how does that apply to you? Finding a provider or getting a referral – is a big accomplishment! Keep in mind, however, that you may be embarking on a new process. You may face a new set of diagnostic tests, series of treatments, or a treatment plan lasting several months or years.
|How can you be prepared to find TMJ treatment that best suits you?
|What are your top 3 symptoms to be addressed TODAY?
|If only one thing could be fixed, what would you choose, and why? What could you live with?
|What is your objective?
|Are you seeking care preventatively (to take steps to make sure your condition does not get worse) or are you seeking palliative care (care right now, for the suffering from pain or disability)? Have you had pain for more than a year, and this is a good time to seek possible treatment?
|Write down your medical history
|Bullet points are fine but don’t use the standard form from the doctor’s office. It’s too easy to check a box quickly. What I am suggesting is to take the time to reflect on events in your life that may be related and discuss medical conditions that may be material. Just as it’s too easy for you to zip through the form, it is sometimes the case that a doctor scans the form too quickly or misses the chronology. Take the time to reflect and prioritize so that your exam time with an expert is optimized.
|Any history of prior injury or trauma?
|Have you had any prior head injuries, accidents, problems with dental procedures? This is really important because often the symptoms that are TMJ-related have a delayed onset and are not recognized at the time. Prior injury or trauma is a primary factor for providers to decode your condition and start with the most appropriate treatment.
|Treatment history is important
|What treatments for TMD have you tried? Write this out – when you tried, what worked and what didn’t. Do you remember why something didn’t work? When were you treated and what was your provider treating at the time?
|How well do you handle pain?
|Can you live with some pain, or some dysfunction, or some ups and downs? How do you handle this constructively (not get angry, not blame, manage anxiety)? Do you like to figure it out first? Does the idea of coaching or a support group sound useful?
|Do you actively manage pain?
|What treatments have you tried for pain – including pain in other parts of your body? What worked well and what did not work well for your condition – the pain or the dysfunction (like a diminished range of motion or flexibility.)
How do you feel about pain medication i.e., it helps to know I have it, or I save it for an emergency, or, I fear side effects, or, I already take too much?
|How do you approach medical care in your life?
|Are you predisposed to take small steps (try in increments, let the patient education sink in overtime) or do you want someone to fix you and get it over with? Do you prefer to leave the decisions to the doctors? Do you need quick answers? If you don’t get the answer you want, what is your typical response?
|How engaged do you want to be in decisions about your care?
|Which works best for you – to read one or more articles before seeing a doctor or to hear directly from the doctor? Do you retain information well, or do you like to follow written instructions or an app? Do you want to follow a doctor’s decision tree in detail? Do you prefer manual therapy to promote body awareness and mind/body or relaxation? Are you this type or the opposite?
|Is cost of care a governing factor?
|Are you willing to pay a considerable price for an expert exam if you believed that the expert specialized in treating patients with TMD? Are you prepared to pay out of pocket? Do you need to cap the budget? If this subject makes you angry, how can you manage your stress so that it doesn’t increase your pain?
|Is this a good time in your life for treatment?
|If needed, can you rest and relax more, cut back on certain responsibilities or activities? If the answer is no, it is highly likely that your recovery may be slower, regardless of who or how you are treated. Be prepared.
|Do you need convenience? Do you need others to understand?
|In general, are you a person that can wait for an appointment, or drive a long-distance? Can you be patient with yourself and others?
|Do you need sympathy and empathy from others?
|If you see a provider who implies it is all in your mind or lectures you about your stressful lifestyle, are you, yourself going to be kind to yourself on this journey and protect yourself from people who put pressure on you to “get over it?
Unfortunately, this is a set-up for problems because having a TMD is stressful, knowing your provider may or may not be successful is stressful, and not having control over your time frame for improvement is stressful. If you are also emotionally vulnerable in your current situation, give thought to what can you do to support yourself and your choices, no matter what others say.
|Do you follow through?
|If a doctor recommends that you use an ice pack during the day, do you follow this advice? If medication is recommended, do you fill the prescription and take the medicine? Do you schedule follow-up appointments, or call in at the last minute? Are there any patterns that you should be honest about, such as feeling like you have no time, you lose things, or have difficulty with a routine? Are you willing to look at your tendencies and make changes if necessary to support your recovery?
The NASEM report quoted above is called Consensus Study Report, Temporomandibular Disorders: Priorities for Research and Care. Based on where the field is today, I strongly agree with this statement in the Conclusion section of the Highlights of their report.
Improving Care for Individuals with TMD Should Include:
- “Developing comprehensive approaches to care that span medicine, dentistry, physical therapy, and other fields of health care – especially interprofessional and interdisciplinary efforts.
- Willingness from health care agencies, organizations, and professionals to commit the resources needed to address this long-neglected and often dismissed area of health care; and
- Openness and commitment to using and strengthening the evidence base on TMD treatment while changing practice as needed.”
Benefits of Low-cost Trial for TMD
Here is a video that demonstrates how our simple “trial” device, QuickSplint works to help reduce craniofacial pain and is used as a low-cost diagnostic tool:
I wish more dentists were willing to offer patients QuickSplint as a simple, cost-effective trial device. QuickSplint doesn’t “fix” TMJ disorders, but it does help a patient and his/or dentist differentiate between a muscle-related condition, or joint condition such as arthritis or degeneration.
Trying something that may be helpful is a benefit for the patient who faces investment decisions related to time, money, and tolerance of physical changes – and yet so many dentists are afraid to offer QuickSplint to their patients because they fear that the patient won’t return for the higher-priced treatment.
Unfortunately, this is part of the reason that so many people resort to over-the-counter “boil and bite” oral appliances that don’t work well, or turn to do-it-yourself hard acrylic aligner devices that have become popular especially during the pandemic as an alternative to consulting a dentist.
Why do so many people in pain postpone treatment? Why do so many go to urgent care or a physical therapist or chiropractor? Lack of awareness and lack of trust, in my opinion. Sometimes, without adequate diagnosis and support, individuals become more prone to pain catastrophizing.
My understanding is that for an acute jaw sprain/strain, simple care can help a person return to normal function (like my sprained ankle, but I needed extra physical therapy.) What I have learned from the dentists who use QuickSplint in their practice, is that trust is enhanced when people are first offered a simple trial on a same date basis, and the dentist has more than one office visit dedicated to getting to know the patient and understands their complete medical history if the condition is more than an acute jaw sprain/strain.
Summary: Can a TMJ Disorder be Fixed?
The answer is, this type of disorder can be treated and improved. Trust factor issues are important: as a patient, try to be realistic about your expectations. If you can afford expert care and this is what is required, be sure to adjust your life and your schedule accordingly, be patient, and be understanding that it may take time for your TMJ pain expert to find the right treatment or for your body to fully respond. Don’t add to your stress during this time period, and don’t go negative on social media about your provider because it won’t really help to put blame on yourself or your provider.
In Part 2 we will discuss different treatment philosophies.
Ann McCulloch, MBA is co-founder and president of Orofacial Therapeutics, this site, and oversees the company’s expanding portfolio of resources and tools for jaw and headache pain diagnosis and treatment. Her chronic jaw pain issues continue to inspire her to investigate the needs and challenges of patients suffering from orofacial pain.