TMJ Friends

I thought before I launched into writing articles and fully running the message board, I should explain where I have been for the past year, and what brought me back.

For those of you who don’t know me, or my story, I had bilateral TMJ replacements about two years ago.  About one year after the surgery, I decided to move back to my favorite city in the world: San Francicso.  When I moved, I was under the impression that I might be able to put some of TMJ disorder behind me.  I had closed the TMJ Friends message board because it was just too much to handle for one person, and started out west.

After the initial excitement of a new beginning wore off, I found myself isolated.  I also realized how much it helped me to set aside my issues and help other people.  I never knew how much I would miss the support and community that was established with TMJ Friends.

Have you ever said to someone, “I have a really bad headache,” and their response was to tell you about how their headache was so much worse.. and then the conversation ends there?   You might get a response like that on a support board, but it doesn’t end there.  It always opens a dialog and prompts feedback from other people.  I didn’t have many people to get feedback from, and certainly not anyone who really understood.  Not that I blame them - how could they understand when they didn’t really know me?

San Francisco was a learning and growing experience.  No one likes pain - we all want to try and change our situations and the circumstances that caused them.  However, a new location doesn’t change anything!  All you can change is the way you feel or deal with your circumstances.  These things are much easier to handle when you are surrounded by people who love and support you.

I think Dorothy from Wizard of Oz said it best: “If I ever go looking for my heart’s desire again, I won’t look any further than my own back yard.  Because if it isn’t there, I never really lost it to begin with!”

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 got my stitches out today and my surgeon says everything is going well. He will be writing the surgeon that did the implants to get a schedule for my physical therapy with the Therabite, and I will go back in 10 days for a check up.

Now comes the hard part - getting my opening bigger. Everything still feels pretty tight, but I’m trying!

Either the swelling has gone down a little bit, or I am getting used to my new big face. I think it’s the latter.
The pain on a scale of one to ten is a tolerable six. I still need pain medication but I don’t feel like crying. It’s hard to distinguish at this point what is surgical pain and what is residual pain left over from TMJ disorder.
This morning when I got up and spoke to my Mom, the strangest thing happened. After I said a couple of words to her, I found myself repeating what I said over and over and making different noises. My new joints vibrate when I talk, but only with certain words. I think I’ll either get used to it, or it will disappear once the swelling goes down. Will I be hearing radio stations next? And I hope if I do it’s not Mexican Polka music!
Most people ask me if the joints feel “weird.” I honestly have to say (besides the vibrating), that they don’t feel any different than my last ones did. I think this both speaks for the amazing construction of them and the incredibly talented surgeon who implanted them.
I still have questions about how they’ll feel as time goes on, like in weather changes - will cold effect me? Will I feel storms coming? I’ll just have to wait and see.

I think that the general rule of thumb is that after any major trauma to your body (and surgery definitely is a trauma), it will take about a year before you feel like it never happened. That isn’t to say I am going to just lay low for a year and feel sorry for myself. However, I do feel that having two major surgeries in such a short period of time has had a profound effect on me even though I may not know it at this moment. I also feel more beat up and more fragile this time around. Perhaps part of that is the let down of having it all over with, too. Friends and family tend to think that the surgery is over with now… I’m okay, and they get on with their lives.. when in fact, this is the period when I probably need the most emotional support. I’m glad to have all of you guys here supporting me, and I know I can count on you when I need you.

By the way, today I had a happy meal and some carrot cake. My tongue was very happy.

Hi everyone.. Yesterday I walked out of the ICU the day after surgery.. again. It took me a little longer this time because my surgeon wanted to make sure my opening was doing well. I can open to about 20mm (bigger than I could before this all started!).
This morning I had pancakes and eggs for breakfast.. my digestive system is a little shocked, so I can only eat a little bit at a time. Now it is time to do the Therabite… I figure eating is a good warm up. My face is REALLY swollen, my Mom says she has never seen it this big before.
I will be posting pictures later today… we lost the cord to transfer pics from the camera to my laptop, so my Mom has to go get a new one.
I know a lot of people are wondering - how do the joints feel? They do not feel mechanical or out of place… they feel quite normal (in a very sore, muscle spasm-y way). The scars are a lot longer than I thought they would be, but they look really good.. My stomach (where they took fat from to pack around the joints to lessen the chance of bad bone forming) doesn’t hurt at all. In fact, in the hospital I thought they had skipped doing that part until I saw the bandage.
Other than that, things are doing ok. I’m hanging in there & have been sleeping a lot. Let me know if you have any questions!

Stace is back at the hotel: real bed, real meds, no beep, beep, beep of the hospital machines all of the time. She CHEWED a grilled cheese sandwich for lunch, YUMMMM! She’s also using the Therabite every hour to improve her opening ASAP. I’m sure she’ll start posting herself soon, surprised it hasn’t happened already.