TMJ Friends

I take pride in announcing that TMJ Friends has joined forces with The TMJ Association.

After several years of research, discussing TMJ issues with other TMJ advocacy groups, and listening to your concerns, it became clear to me that the most effective way to advocate for you would be to join forces with The TMJ Association.

This merger will enable you to not only continue the associations you have already made but to expand your horizons and meet up with thousands of other TMJ patients.

As a unified group, our goals are to advocate, promote awareness, and provide a single, helpful source of information.

The good news is that you do not have to do a thing. Our new message board is up and running, and we are waiting to meet you!

With the added strength of your voices, we can continue to encourage scientific research to provide you with safer and more effective methods of diagnosis and treatment.

Will you join us in changing the face of TMJ?

http://forum.tmj.org

We have a new message board up and running!  There are still some tweaks to be made here and there, and I am in the middle of designing a new look for it.. but it’s running and ready for you to introduce yourself!

Visit today!

One of the most common questions I am asked regarding my joint replacements is if I would do it again. That is a hard question, because I feel as though I had very little choice. My joints were fused, and I could either live with extremely limited function and a high pain level, or I could take the chance on the total joint replacements and gain both pain relief and function, or at least one of the two.
They say hindsight is 20/20. Considering the small gain in function and limited pain relief, I would NOT do it again.

I don’t think the small things I gained were worth the pain, effort, travel, and money.

I am also very limited in what can be done now that I have the joint replacements. I am very young, and because of this will end up having many more joint replacements.
Very few doctors know how to deal with the chronic pain and limited function that I have as a result of over 10 TMJ surgeries and nerve damage.

If and/or when the joint replacements fail, I have no options other than new joint replacements. If I become allergic to the materials in the joints, I have no options.

I do believe TMJ total joint replacements have their place in TMJ surgery. Some patients are good candidates for this procedure and do very well for years. There are patients now that have had joint replacements for over 15 years and are doing very well. However, these patients are few and far between.

The lesson here is to make sure you understand that total joint replacements often do NOT relieve pain.  If the major reason you are having the joint replacements is pain, you might be better off in long term pain management.

How to Get Help When You Are in Pain

If you accept the standard of care that medical providers deem appropriate for you, you are not necessarily going to get the standard of care that you deserve. You HAVE to be more vocal. Medical care now is a partnership between medical professional and patient. Gone are the days when treatment was dictated to the patient and the patient had no other options. Hospital personnel and many medical professionals are overworked, underpaid, understaffed, and in many cases, inexperienced. That is why YOU as the patient, owe it to yourself to be as informed as possible BEFORE you have any procedures done or go in for any type of medical treatment. It is our responsibility as patients to take advantage of the vast resources that we have available at our fingertips.
For most patients, pain management is something that is not always adequately addressed.

• Patients are afraid to admit that they need help
• Patients are afraid to ask for medication
• Doctors are afraid to prescribe because of restrictions placed on them by the government
• Doctor/Patient relationships are short lived because of referrals, so doctors do not know and/or trust the patient enough to prescribe pain medication
• Lack of knowledge by the patient about what is available.

Who Can Treat Pain?

There are pain management specialists who are board certified in pain management. Who you choose to manage your pain will depend on your specific needs. For example, a chronic migraine patient might choose a neurologist to treat his or her pain because the neurologist has more experience dealing with headache patients. Once you choose a pain management specialist, it is usually expected of you to only see that physician for your pain needs. Sometimes the specialist will have you sign a contract, which states that you will only take pain medication from him or her and will consent to random urine testing, pill counts, or other measures that protect both you and the doctor. Some physicians will write you a prescription for emergency room visits that dictate what you should be given in the event of an emergency, what emergency room you should go to, and what medications you are on. This precaution makes emergency room visits much easier.

How is Pain Treated?

Pain management can be trial and error. Medications can be tried for a variety of different symptoms. Most patients find that a combination of different drugs is the most effective therapy. Some of the different types of medications used for pain management are:

• Anti-inflammatories - These medications help reduce swelling and pain. Examples include Relafen, Mobic, Celebrex, Ibuprofen, and Naproxen.
• Muscle Relaxants - These medications help to reduce muscle spasms and tightness. Examples include Soma, Zanaflex, Flexeril, Baclofen, and Skelaxin.
• Nerve Pain Medications - These help to reduce pain due to nerve damage and can also be used to lower pain as a whole. Examples include Neurontin, Topamax, Keppra, and Lyrica.
• Anti-Anxiety Medications - These help to reduce anxiety due to pain. Examples include Valium, Klonipin, Ativan, and Xanax.
• Anti-Depressants - Are used to help with depression due to pain as well as reduce pain in general. Examples include Lexapro, Wellbutrin, Paxil, Nortriptalyine, Elavil, and Prozac.

Opiates

Opiates are used to reduce moderate to severe pain. They are agents that bind to opioid receptors, found in the central nervous system. They are most commonly used for moderate to severe pain.
Short acting opiates, such as Vicodin, Lortab, and Percocet are used for acute or break through pain and are usually prescribed for short periods of time. However, if a patient is taking an appropriate amount, the doctor may choose to keep him or her on the medication for longer periods.
If a patient has been in pain for longer than 6 months, is anticipated to have chronic pain for a long a period of time, or their current short acting medication is inadequate, they can be prescribed long acting opiates. Long acting opiates are slowly released into the system over a period of hours or days depending on the particular medication. Some examples are Oxycontin, Duragesic (Fentanyl) patches, MS Contin, and Methadone. These medications can not be stopped abruptly. They need to be slowly tapered off to avoid discomfort (withdrawal) and side effects. Dosing instructions are for your protection and need to followed very carefully to avoid any potential problems.
In the recent years, there has been a lot said in the media regarding some of the medications used to treat chronic pain since they can be habit forming. There has been and still are many misconceptions concerning addiction, dependence and tolerance with these medications, as well as a doctor’s hesitance or willingness to prescribe them. If a chronic pain patient follows their doctors orders, keeps their medications out of the reach of others (this may involve keeping them under lock and key), signs a pain contract, and is compliant with other precautionary measures, there usually is no danger in taking opiates for the treatment of non-cancer chronic pain.
However, as with any medical treatment, it is best to be knowledgeable about terminology and aware of possible issues that could present. There is an enormous difference between addiction and dependence. They are NOT the same thing.
The dictionary describes addiction as the “compulsive physiological and psychological need for a habit-forming substance.” Dependence and tolerance are also present. And dependence is described as a “physical dependence,” where the body will develop withdrawal symptoms upon stopping the substance. Tolerance is defined as “diminution in the response to a drug after prolonged use.” Many chronic pain patients experience a time when their medication does not work as effectively and they must increase the dosage of the medication or switch all together to continue receiving pain relief. Many chronic pain patients are afraid of addiction, when that seldomly occurs. Less than 1% of chronic pain patients end up addicted to pain medication. Prior drug abuse tends to increase ones chances to becoming addicted to pain medication.

It is important for chronic patients to see physicians who are experienced in treating with opioids. Some doctors are not educated about the differences between addiction, dependence, tolerance and pseudo-addiction. Pseudo-addiction is when a patient displays all the warning signs and symptoms of addiction, however, is actually just under treated and needs their pain managed better.

It is also very important to educate family and friends about the differences explained above. This way they will understand your treatment and not become suspicious or difficult because of your pain management. Taking your family with you to the doctor is encouraged so that they can ask questions and listen to your treatment plan.

Other Types of Treatment

Many patients find that with a chronic pain condition, a multi-disciplinary team approach works best, meaning that one would see different physicians and have different treatment for many of their symptoms. Some of the other types of treatment include:

• Physical Therapy
• Trigger Point Injections
• Massage Therapy
• Acupuncture
• Chiropractic
• Counseling alone or with family
• Support Groups
• Other injections such as facet blocks, nerve blocks, etc
• Biofeedback, relaxation therapies, stress management
• Lifestyle changes

Chronic pain can be caused by a myriad of different problems, such as arthritis, back pain, migraines, abdominal pain, bowel disorders, pelvic pain, fibromyalgia, reflex sympathetic dystrophy, lupus (and other systemic autoimmune/connective tissue conditions), multiple sclerosis, along with TMJ disorder, facial pain, myofascial pain, and other related conditions.
Medications also work for different conditions, and can be used for different problems or symptoms than what is listed above.

If you have questions about your pain, treatment, medication, side effects, dosing, etc please contact your pharmacist or physician.

Chronic pain affects more than 75 million people in the United States and costs over 100 billion dollars per year. It is an important issue that often overlooked and under-addressed by both patient and doctor. Hopefully with advent of the internet and more knowledgeable patients & physicians, less people will suffer needlessly in pain.

If you have any questions about pain management for TMJ disorder or other painful conditions (such as back pain, fibromyalgia, chronic fatigue syndrome, migraines, atypical facial pain, myofascial pain, reflex sympathetic dystrophy - RSD, chronic regional pain syndrome - CRPS, etc) the questions page on the website lets you know how to submit questions that will be featured on the TMJ Friends blog.  For support from other patients, visit our message board.

Meanwhile, take care of yourself and don’t forget to get a good night’s rest, try to eat nutritious foods, and exercise if you can.

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!”