TMJ Friends

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.

My story started almost a year ago when I went to the oral surgeon to have a lesion removed from my tongue. I am 40 years old. The oral surgeon told me my upper wisdom teeth were rotted and I should have them extracted. They were fully grown in, not impacted and I had never had any trouble with them, but truth be told, I was afraid to have the lesion remove from my tongue while awake so I agreed to have the wisdom teeth done so I could be but to sleep. It turned out the lesion was pre-cancerous. I vaguely remember the OS saying he had to really wrench one of the wisdom teeth out. That is what started by journey to hell. Several days later I returned to the OS complaining of pain in my jaw. He said I must have a dry socket and wrenched my mouth open to put some medication in the socket left by the removed tooth. He got aggravated with me because I could not open my jaw wide enough so he could do this easily. There was no dry socket and the medicated gauze promptly fell out. Several days after that I returned again complaining of continued pain in my jaw. He put me on valium and that was the first time I heard the word TMJ.

He too felt it was TMJ and I had my first of 3 arthrocentesis surgeries last November. It was horrible. My pain continued and I could not close my mouth for a week. I had 2 more arthrocentesis’ done in February and April. I quit my job and dropped out of school. I was on constant pain meds and every muscle relaxer out there. Nothing helped. I had an MRI done which showed “nothing conclusive”. By now my opening ability was between 7 and 10 mm, I could eat strictly soft foods and was in pain around the clock. My primary care doctor started treating my like some type of drug seeking junkie.

Finally I had arthroplasty in June. My doctor found bone spurs which he filed down, recontoured my jaw line because it did not “look right” and sewed my disc in place. Recovery was painful.

I still continued to have constant pain but my opening ability increased to 32mm - WOW!

I had trigger point injections because I started having severe headaches and my muscles seemed immune to any type of muscle relaxer. A horrid grinding noise started in my jaw whenever I eat or move my jaw from side to side. I was in physical therapy following surgery which considerably helped my mobility but did nothing for pain reduction. My physical therapist asked me my goals for physical therapy and I told him I want to be able to eat a big mac and steak again. I suceeded in neither of these. The night bite guard that I had been wearing prior to surgery no longer fit right but I was told to keep wearing it. I continued to complain about the bite guard not fitting right and making my bite seem even more off. My OS finally told me to discontinue using it. WOW what a difference this has made. Two nights not wearing it and my bite almost felt normal again and my pain was reduced in half.

My OS and I have concluded that there is nothing else he can do for me and I am seeing a new doctor in October. He is a renowned specialist in TMJ. I am looking foward to meeting with him and hope he can help me. My new found pain reduction has changed my life and I almost feel normal again. The pain is controllable with medication when before taking vicoden was like taking an M&M. I hope I can return to school next January and start being the mother I have not been for almost a year. That is my story.

I hope to God this is just a “blip” in my life. But judging from reading tons of info on TMJ it sounds like it will be a life long struggle with good and bad periods.

I am updating my story, May 6, 2005. Unfortunately, this turned out not to be just a blip in my life. The new doctor turned out to be a worse nightmare than I could have imagined. He yanked me off of my meds and told me to take high doses of ibuprofen. That landed me in the hospital with dehydration from ripping my stomach to shreads and my bowels to water. Needless to say, I did not return to him. I was planning a trip to Boston to visit my family, my dad had surgery for tongue cancer and my grandfather had just passed away. I decided to see a doctor up there. I went to a doctor my dad had seen for his tongue cancer. He is a jaw reconstruction specialist. Before he would see me, he set up an MRI and a CAT scan and an appointment with a pain management specialist. When I got there, I had the scans and met with the pain management specialist. What a wonderful and caring doc! I had just about given up hope of ever finding a caring doc. After the scans I met with the surgeon to be evaluated for total joint replacement.

The surgeon did not feel I was a candidate for it - yet. I did have a chunk missing out of my bone and had scar tissue in the joint from previous surgeries. He said if he did surgery on me, he wanted it to be the last one and he wanted it to improve my pain and function and not make things worse.

So at this point, I have no future surgeries looming. I am being treated for pain only and had a new splint made to help avoid any further damage to the joint. It is not going to fix me. Nothing is going to fix me. I know that and the docs know that.

I have to travel to Boston once a month to see my doctor for now. But it worth the hassle.

Update, May 2008:  Amy contacted me to let me know that she has tapered off of all her opiate medications.  She says that she feels no worse than she did on them, and is really very pleased with the results.  She is working part-time as well as taking care of her kids, and feels very functional.  Congratulations, Amy!

If you have any questions for Amy, please either post a comment, or visit our questions page.

I am not really sure where my story begins, but I do have two suspicions. One is in 1988, I had to have my wisdom teeth pulled because they were causing problems. They were very impacted, and I could not open my mouth more that 10 mm. After they were pulled, I then had full range of motion.

The next suspicion was in 1998. I was hit very hard in the back end of my husband’s pick-up truck and hit my head on the back glass. After the accident I had severe headaches for 3 weeks straight. Nothing I did would relieve the headaches. I couldn’t even think for myself. My husband finally insisted that I go to the emergency room to have a mri done. All they scanned was my brain, and it only showed a mild concussion. They gave me some pain meds and sent me on my way. The headaches did go away for about a month, but then returned with a vengeance.

Now I have headaches every day. This is the year 2006 people. My jaws started popping about 3 years ago, and I never thought any thing of tmj til I went to the dentist 2 years ago, and he told me that I might have tmj. He sent me to a specialist who I have been seeing since. Been through the splint therapy and still going thru it and the so called pain therapy. My specialist finally agreed to send me to get an MRI. Got my reading back on Tuesday April 4th. The mri showed a torn ligament in my left jaw as well as spurs on both jaws and total derangement of both discs and of course the adhesions. I am actually relieved that it is this and not brain tumors. ( you see my dad died with a brain tumor in 1989, and my sister is in remission from brain tumors.) Now, the next step for me is to see a shrink, to see if stress is the cause of the problems at hand. The date for that is May 1st. My doc wants to do surgery. However, I am planning on a second opinion first. If it will make the headaches go away, I do want to do the surgery. We will see what is to come. By the way my left jaw has gone into lock down. My right, well lets just say can’t do much without the left. There will be more to come as I journey through this thing called TMJ.

To read more stories of people like you, visit our TMJ patient story page.  As always, if you have any questions, comments, suggestions, or tips, let us know!

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!”