TMJ Friends

TMJ Disorder: Where Do I Begin? Part I
What Type of Doctors Treat TMJ Disorder?
This article is the first in a two part series for people who have just been diagnosed with TMJ disorder or those who still have questions about the process. Since TMJ disorder effects so many bodily systems and can produce so many different symptoms, a variety of doctors treat the disorder. Through much trial and error, we have found that a team approach is the most beneficial and produces the best results. This article will go over the type of doctors you may encounter in the course of your treatment.
These doctors will be listed chronologically, however, since each person is different, your specific treatment plan could be different as well. Some of us start with a neurologist because of the headaches brought on by TMJ disorder, others start with a surgeon because their problems were brought on by trauma. This will just attempt to summarize each doctor’s role in the treatment of this disorder.

The first stop in many patient’s treatment is their general or family dentist. The dentist will check for a number of signs that indicate TMJ disorder is present. These include tooth wear from grinding or clenching. He may also begin by listening to the jaw with a stethoscope to check for popping, grinding, or any other sounds that may not be consistent with normal jaw function. He will palpate and apply gentle pressure to your face, neck, shoulders and/or back. Depending on your dentist’s training or specialty, other tests might be done, which will explain later. If you do have any of the symptoms as explained above, your dentist may do one of several things. He may fabricate a splint which prevents further tooth wear and helps pain. Keep in mind that the splint is a trial and error process. It will require many visits to adjust the splint to get maximum benefit. You might also need to try several appliances before finding the right one for you. The dentist might also prescribe medications such as anti-inflammatories and muscle relaxants, or he may refer you to our next professional, the “TMJ specialist.”

The TMJ specialist is a dentist who has usually had extra training to help him become more familiar with TMJ disorder. It is always a good idea to ask the dentist what training he or she has had. Please refer to our article entitled “How to Choose a Doctor” for more information. The TMJ specialist will most likely do a more extensive examination than your general dentist. He might take different types of x-rays such as a panorex or tomogram, or order an MRI. You may question why to see a general dentist if you could just see a TMJ disorder specialist.

Most cases are manageable at the general or family dentist level, and do not need further intervention from a more specialized doctor. Keep in mind that these cases can be managed without invasive or irreversible treatment such as grinding your teeth down or changing your bite. If this is proposed, you may feel the need to secure a second or third opinion. The TMJ specialist will be your primary diagnostician based on results from tests, physical examination, your symptoms, how your teeth fit together, etc. Depending on what your diagnosis is, this doctor may do a multitude of things, like splint therapy, trigger point injections, iontophoresis, ultrasound,transcutaneous electric nerve stimulation. They may refer you to other doctors such as a neurologist, ear nose and throat doctor, pain specialist, or oral surgeon. This doctor will come up with a treatment plan for you which can include any of the above. Usually they refer to this treatment plan by “Phase One” and “Phase Two.” Phase one is generally reducing pain, stopping any inflammatory or degenerative processes. This part of the plan is usually conservative. When your pain has subsided, and a correct diagnosis has been established, you move on to Phase Two, which can include braces, equilibration and total reconstruction including crown work and bridges. These treatments are non-reversible and invasive. Please keep in mind that this varies from doctor to doctor. At this point of treatment, many patients see a psychologist to help deal with the pain and associated effects of TMJ disorder on their life and their family. This is a very important aspect of treatment.

Please keep in mind that there is no board certification for “TMJ Specialists.” Any doctor can call themselves a specialist, whether they have had 5 hours of education on TMJ disorder or 5000. This makes it extremely important to do research on the particular physician you choose.

If the patient has headaches, burning pain, migraines or any neurological symptoms, they can be referred to a neurologist.

The Neurologist is a doctor who specializes in nerves and diseases of the brain and spinal column. Some patients with TMJ disorder see a neurologist for a headaches or facial nerve pain. A neurologist’s examination includes checking reflexes, strength, eye movement and nerve reaction. He might listen to your jaw joints with a stethoscope.
If you haven’t had an MRI by this point, the neurologist might order one.

The next installment of this three part article will cover Ear Nose and Throat doctors, pain management specialists, and oral surgeons.

How to Choose a TMJ Disorder Doctor

One of the most difficult parts of TMJ treatment or any kind of treatment is finding a good doctor or dentist.

One thing that is really important is having a primary care physician that you like, trust and who isn’t afraid to say “I don’t know, but I’ll find out”, or “I need to send you to a specialist”. The advantage of having a great primary care physician is that the great doctors know other great doctors. He or she can refer you to the top specialists in the area, and you can be confident that you are receiving the best care possible.

Research

This helps with most things, like cardiologists or allergists, but when it comes to interesting topics like TMJ disorder, many doctors might not know who to refer to, or not know any good physicians in the area. If your primary doctor does not know where to send you, do a search on Google for TMJ disorder specialists in the closest big city. Look at their websites, search their names to see if they have any published research (or any complaints). Refer to the latter part of this article for more in depth information on researching a doctor’s credentials.

Make a list of your priorities. Here is a sample list, but note that your list may be different depending on your particular needs.

1. What characteristics are important to you in a doctor?
2. Make a list of the doctors you find.
3. Check credentials.
4. Contact the doctor’s office.
5. Meet with the doctor.

1) Do you want a doctor who helps you make decisions and explains the choices you have in treatments?

Or would you like a doctor who makes the decisions for you without any discussion as to what the different choices were?

Or, would you like something in between?

This is important because if you will be doing a lot of research on your own, you need a doctor who is receptive to this type of participation. Conversely, if you don’t want to do research, you need to find a doctor who is comfortable with making decisions based on his professional experience.

Would you like a doctor who is involved in the latest research? Or part of a large university? Or a doctor who is more conservative and waits until cutting edge technology is more proven?

2) Resources for locating physicians:

American Dental Association: http://www.ada.org
American Academy of Craniofacial Pain: http://www.aacfp.org
American Board of Orofacial Pain: http://www.abop.net
American Society of Temporomandibular Joint Surgeons: http://www.astmjs.org

Credentials

3) The websites above will give you an idea of the doctor’s credentials, but you can also check on licensing and board certification through websites such as:
DocBoard
Amyrdh
Certifacts

Interviews

4) You might want to call the doctor’s offices that you are interested in and ask some general questions about their policies and rules. Some questions you might want to ask:
1. Office hours
2. Which hospitals the doctor has privileges and where procedures are done
3. After hour protocol and who covers for the physician if he or she is not available
4. How long is the wait to schedule an initial and/or routine appointment
5. How long is a typical wait in the office when scheduled for an appointment
6. What is the cancellation policy?
7. Protocol for refills and new prescriptions over the phone
8. Emergency information

Evaluate and Choose

After your phone interview with the staff and first appointment, ask yourself the following:

Did they:

1. Give me a chance to ask questions?
2. Really listen to my questions?
3. Answer in terms I understand?
4. Show respect for me?
5. Ask me questions?
6. Make me feel comfortable?
7. Address the health problems I came with?
8. Ask me my preferences about different kinds of treatments?
9. Spend enough time with me?
10. Take my concerns seriously?

Remember that a doctor’s staff is a reflection on him to some degree (especially if he is the only doctor in the office). If you can’t get to the doctor when you call in because the staff will not work with you, that may or may not be the doctor for you.

Also, you cannot put enough emphasis on your gut instinct of your initial impression of the doctor. If you feel something is not right, or find yourself making excuses for the doctor or his staff, trust in your instincts and move on to the next doctor on your list.

Hopefully this helps make the difficult task of choosing just the right doctor for you a little bit easier!

A Mother’s Perspective
written by Candy, my Mom

As the parent of a child with TMJ disorder, the first thing I want to say is that I am not perfect. I get impatient, and on occasion exhibit and those behaviors that I condemn in others who don’t live with this situation on a daily basis. I think this is mostly due to frustration, and the inability to stop the cycle that has turned our lives upside down. Having said that, I must also add that I am the eternal optimist. Frustrations are short lived, and replaced with hope. Hope that the next procedure will be the last, hope that my child will once again leave the nest and be whole again.
TMJ disorder has been an all encompassing disease. It has affected every aspect of our lives, but we have learned to cope with the limits it presents.
We have learned not to make plans, but take the days as they come. I will try to run down the list of adjustments we have made, and the coping mechanisms I use to make our lives easier.

*Food - Our refrigerator and cupboards are filled with soft foods such as puddings, potatoes for baking, soups, oatmeal, cereal, fresh fruit for smoothies, and liquid diet supplements. Stacy uses the rubber coated baby spoons.

*Sleep - This has been an area that we have not been able to control. Stacy pretty much sleeps when she can. We have found that using one of those neck pillows with the tiny pellets in it helps relieve pressure because she puts her ear in the hole. Sleep medications have not been able to induce the quality and duration of sleep that she needs because she wakes up as soon as they wear off. Her 8 hours of sleep is usually from cat naps during the day, and a 4 to 5 hour stretch at night. It is difficult for me to adjust to this because out of habit, I find it to be my job as a Mother to see that my children are sleeping at night. My children have made a joke out of me telling them to “go to bed,” something I continue to do even though two of them live hours away.

*Shopping and Lunch - Now you might think I am crazy, but this is a natural part of the Mother Daughter bonding experience. Stacy and I used to shop like it was a job. Now we go to Target, fill a cart with all the things we want (not need), then Stacy tires out, and we abandon the cart, and go home. Thereby fulfilling the urge to shop, without having the expense, and we avoid standing in line. On a good day, we will make minor purchases, and skip going to lunch because a nap is in order.

*TMJ Friends - Stacy spends hours each day on the internet, researching, answering questions, talking on the phone, and writing articles. During my periods of frustration, I get upset that she can do all those things and not participate more in the running of the household. It is difficult for me to hold back my feelings at times, and I become short tempered. However, I do try to understand that it is important for her to feel that she is doing something to help others and take the focus of herself. To her credit, Stacy has given 110% to the organization and has more determination than anyone I know. But dang it, Stacy, can’t you just put your dishes in the dishwasher? (I feel better now…LOL)

*Relationships with family - This is a pretty sticky topic. Stacy has been living with her stepfather Rich and myself on and off for the past 2 years while she undergoes medical treatment. It has been a difficult situation at times. The rest of the family thinks she should be working and living on her own. Sometimes I think if she had another disease, or a growth that they could see, they would be more sympathetic. We have several concerns about their attitudes, and how they will treat her when she has the joint replacements. We live with the fear that they might not be successful. Rich, her Stepfather, has been wonderful and has accepted the situation with grace. Stacy’s younger brother has a hard time understanding and sometimes seems resentful of the attention she gets. I think that his reaction is pretty normal, and I talk to him often about his feelings. Does it help? I don’t know! The relationship Stacy has with her father is a whole article of it’s own, and I won’t even go there except to say that when it comes down to it, he is as supportive as he knows how to be.

*Money - Do you have an hour? Her father contributes when pushed into it, and extracts a price for every penny he gives. He does pay for some of her medical expenses, and is in a financial position to pay all of them.

*Surgeries - This subject is a mothers worst nightmare. Stacy has been through so many, and each one presents a new set of issues that we thought we had prepared for. Pain management is the worst, we fight with nurses, threaten to leave AMA, and still have not been able to conquer this problem. Somehow communication between anesthesiologists, surgeons, and nurses is lost when the surgery is over and Stacy is left in excruciating pain. We go into each surgery with humor.. writing notes on Stacy’s body, reminding the surgeon to wash his hands, noting which side is the WRONG side… you get the picture. We always remember to bring her blankie for recovery. Inevitably, she comes out of surgery in pain and it is never controlled. When she spends the night, I stay with her. I always prepare her room for homecoming.. fill it with her favorite flowers, scented candles, her favorite beech sheets (ask Stacy about these). Of course her laptop is in place next to the bed so she can hop on the board and give you the latest update.

The pain of seeing your child go through surgery does not ease up after the second, third, of sixth time. I have learned to do my crying at night when I am alone, some may view my reactions as being unemotional, but the emotions are there, just under the surface. I have learned to control them before they control me.

In closing, I would like to say that like you, I don’t have the answers. I can only share my side of the story in hopes that those of you reading it will get a better understanding of what the view is like from this side of TMJ disorder.
The only sage advice I can give is to keep your sense of humor, and “GO TO BED!”

We have decided to go through with the total joint replacements without insurance coverage. I really hate that it has to come to this, but my condition is getting progressively worse, and I’m not sure how much longer I will be able to deal with it.

I will be walking you through the process, surgery, and recovery as it happens with pictures and detailed accounts of how I am feeling each day. Hopefully this will not only help others who will be having this surgery but will also increase the awareness among those who do not have TMJ disorder.

The website and message board are extremely important to me, and I will keep them up and running as long as my financial situation allows. I want to thank all of you for your continued support.

Merry Christmas, Happy Holidays, Happy Hanukkah, Selemat Hari Nata, Feliz Navidad, Buon Natale, Gezur Krislinjden, Frohe Weihnachten, Buon Natale, Joyeux Noel, Feliz Natal, Boas Festas!

Note: It is May 2008, and I am restoring posts from my joint replacement process so that information is available for those who seek it.  Please let me know if you have any questions.