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Who Owns YOUR TMJ Implant?

Especially during this past year, it’s been brought to our attention by a number of TMJ implant patients having their implants removed that...

Social Security Disability Benefits and Temporomandibular Disorders

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This month we present the last set of findings from “Act Two” of the Oral Pain: Prospective Evaluation and Risk Assessment (OPPERA)...

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Last month we began our report on findings in OPPERA's Act Two," the second series of analyses of data from the Orofacial Pain Prospective...

Temporomandibular Disorders and Sexual Intimacy

A recent posting on the TMJA website included the following request: "I wonder if you could include something in a future newsletter about...

Terri: A Light at the End of the Tunnel

Jul 14, 2010

At the tender age of 19, I was forced in to a marriage with a man 16 years older than myself. He brutally abused me every single day. Beatings, emotional abuse, rapes, you name it I got it. One day he sucker punched my left jaw 3 times and broke my jaw immediately. Refusing to take me to the hospital and knowing he would be arrested my jaw had no choice but to heal on its own. He did not care that my jaw was broke and he thought it was funny when he would hit me in my face on a daily basis. My jaw would ache and throb so bad that I would secretly & silently cry at night when my abuser was sleeping. It was the only time I could let my feelings out. He was so cruel that he did not care one bit about the pain he was putting me through. He actually thought it was funny at times when he would laugh uncontrollably at me. There were so many times I tried to escape but he was slick, he knew how to keep me a prisoner. I was not allowed to go to the store or any where for that matter without one of his two sons tagging along.

Fast forward 4 long and painful years I am now escaped and FREE. I now can take care of my jaw but is so damaged and destroyed from all the abuse I had received. Trying to find a good TMJ doctor was so difficult because not many doctors will do much with TMJ. I had heard that a local dental school was one of the best and I went straight to the then dean. I felt relieved because I found a good oral & maxillofacial surgeon but I was so petrified to have surgery. My gut told me one thing but my MRI showed severe damage including arthritis on both sides of my jaw. It showed that both discs were popped out of place and my jaw joint was literally bone on bone.

In April of 1998 I had my first surgery. I had two choices. One was to put my dislocated meniscus back in place or I could do a more invasive surgery and remove both discs and take tissue from my groin and use that as a replacement. I chose the second one because it had a better success rate. 80% is what I was told the success rate was. That sounded good to me I wanted him to take tissue from my groin area and use that as a replaced disc. I just wanted to get it over with and get on with my new life.

After surgery I woke up and he had made the decision to perform the 1st surgery, the one that I did not want. He put my dislocated discs back in place. Boy was I mad to say the least. I wanted to have just one surgery and forget about it. Had I knew then what I know now I know my path would have been different. But this was my path and I had no choice but to deal with it.

So just 2 weeks after my surgery both discs had fragmented in tiny little pieces. My doctor had told me that I needed to open my mouth enough to bite an apple by the time I came for my 2 week checkup. There was no way that I met that goal because of the fragmented discs. My doctor called me a liar, he said that I was faking it and that I could really open my mouth but I was pretending. He actually told me that I had 3 more weeks to get it open or he was going to put me to sleep and open it for me. Imagine being told that by your surgeon who you are supposed to trust and feel comfortable with. This man had no bedside manner as you can probably tell.

After another 2 weeks I came back with no change at all. My jaw was literally stuck. No side to side movement, when I opened my mouth I could only fit 1 finger between the spaces of my teeth and I was unable to move my bottom jaw forward. My jaw was actually 10 times worse then it was before any surgery. So once again he threatened to put me to sleep and open my jaw for me. That was it, I had had it. I told him “go ahead and put me to sleep, you try and open it. I am not faking”. This was the last straw, I had to prove it, I had to prove I was telling the truth.

So in May of ‘98 he did just that. Before I was wheeled in to the operating room he had received my new MRI report and films. It completely backed up my claims that I was unable to open my mouth. Never had I been so grateful to have had a scan or X-ray of any kind. The report stated that both my discs were fragmented in tiny tiny little pieces and that my jaw was bone on bone. Of course the next comment he said to me I should have seen coming as he actually said that the films were incorrect. They are not reliable he said. Despite the MRI results the doctor wanted to go ahead with a manipulation surgery. Since my jaw was essentially stuck in one place he still was going to manipulate it. I was completely fine with this because it was the only way I could prove that I was not faking or lying.

After I woke from the surgery he came to me and actually admitted that he was unable to move it what so ever. Even though I was correct he never apologized. Against my better judgment I let all his behavior go and was going to let him perform another surgery. This was in June of ‘98 and I told myself if this does not work, that is it, no more. This time he had to clean out my jaw and once again remove all the fragments. It was just so disappointing because this is what I wanted to begin with. The groin tissues were used as a replacement of my discs. But the same thing happened to me as the first one. Within 2 weeks that tissue was fragmented. How can this happen again? How can this tissue fragment, after all, I did everything my surgeon told me to do. I was a star patient.

Of course once again my doctor called me a liar. Then I could not believe what I was about to hear. He actually said “it’s your fault, I have never had any failed surgeries and it is all your fault”. Did he actually say that to me? Did he actually tell me that it was all my fault? How can that be? How can I make the surgery fail? After all the abuse I had taken from this man I knew I would never go back to him. I was over being abused by these mean men who had no respect for women. There was no way that I wanted to look for another surgeon right away especially since I had just gone through 3 horrible surgeries from one horrible surgeon. Besides that it took me forever to find him. I did not want to go to doctor after doctor trying to find one that will take care of my needs. So I did nothing for 4 long and painful years. Besides I was told that surgeons do not like to operate on patients who were treated by other surgeons.

Eventually it got so bad that my whole face, jaw and my whole body was in pain that I could barely walk, eat, talk or yawn. My rheumatologist could not figure out why my whole body hurt like that so she ordered blood work. The blood results showed that there was so much inflammation and it was all due to the osteoarthritis. At least I am not crazy. Knowing that I could not go on with this much pain I knew I had to seek out a new oral maxillofacial surgeon. Each doctor I would see I was in complete tears trying to explain what I had gone through and how terrified I was.

Finally I found a doctor who I thought would treat me the way I wanted to be treated, would not destroy my jaw any further and would get me out of the horrendous pain that I was living with on a day to day basis. If he would do those 3 things I would go through with it. When I sat down with my new surgeon he looked over my MRI films and told me that I was the absolute worst case he had ever seen. Their practice had never seen osteoarthritis damage so much bone loss before. They had told me that if I would let it go and not have the replacement surgery then the osteoarthritis would continue on down my bottom jaw and pull if backwards making my top jaw look like a massive overbite. Obviously I had no choice. They also said that there was no way I would ever be out of pain and they were doing the surgery solely for the joint replacement and to remove as much arthritis as possible.

So on November 20th 2002 I had my bilateral total joint replacement. It was the most traumatic thing I had ever gone through. The fear was so intense and I just remember crying hysterically before being wheeled into the operating room. The anesthesiologist actually gave me heavier drugs then normal to calm me down while waiting for my surgery. At this point in my life this was the hardest thing I have ever gone through. It surpassed all the abuse I went through, all the physical pain I endured and all the emotional pain I was given. Finally it was time, time to go through the one surgery I wanted to avoid. Never in my mind did I ever believe that I would have to have a total joint replacement. It is surgery day and my surgeons told me that the surgery would be around 4 to 6 hours and I would either be able to go home that night or the next day at the latest.

My surgery took 10 long brutal hours. Due to complications I was not allowed to go home until 10 days later. I was in ICU on a ventilator for 4 days. Intubation is one of my biggest fears. I hate the thought of a tube being down my throat. The other 6 days was filled with relentless pain and physical therapy. I just remember begging the physical therapist in the hospital to not make me do any more exercises. It hurt so bad and I did not want to go one more second. She made me continue on as it was so important to exercise my jaw to get it as opened as possible. So after 10 long days I got to go home and I was thankful for that.

Looking back I just remember it took 1 long year to fully recover from my joint replacement surgery. My pain never went away and it never will. I must see a pain specialist and be on pain medications for the rest of my life.

Even though I have to be in chronic pain forever I am so very grateful to have the best pain doctor in the world. He is amazing, caring and he really takes good care of me. Most of all he believes me! That means so much to me to have a doctor understanding the amount of pain that I deal with every single day. That in itself is hard to come by.

It will be 8 years this year since my total joint replacement surgery and I often think about the day that I will have to have that artificial joint replaced. I just take it day by day sometimes hour by hour. Those who suffer with TMJ can understand what I mean about the pain that we feel. It is unlike any other pain. Most people do not think about how you have to use your jaw every single day. It is not like a leg or an arm where you can get by without using it very much. We chew, we eat, we yawn and we talk. All of those things hurt our jaw and so many people do not understand what we deal with.

Hopefully one day doctors will be able to do more for those of us who are dealing with this.

I did want to add that I am married and we will celebrate 12 years of marriage this August 20th. He has gone through every single thing with me. He has let me cry on his shoulder when I thought I could not take it any longer. I am truly blessed despite all I have gone through.

If I have learned anything it is do your homework. Do not jump to the first surgeon that is willing to perform surgery. Ask any and all questions and if they refuse to answer them or make you feel uncomfortable find a surgeon that will. They should do all the things you need to feel like they are the ones to help you.

If I could go back and do it all over again I would have never had the first surgery. That was my biggest mistake. Once you have it you can’t go back, you can’t fix any damage that the surgery may cause. My pain is worse now then it was back then before any surgery. Truly I believe that I would have been able to tolerate the pain had I let my jaw just go like it was. Maybe some day I would have had to go through surgery but I would have waited until my body showed me that it was ready.

If my story can save one person from going through what I have gone through then it was worth it. I don’t want any person putting all their trust in a doctor just because he as the initials D.D.S. at the end of his name. Please do your homework, talk to other patients and see what their experience was like. Call the better business bureau and the medical board to see if any complaints were made. Do your research on the type of implant you will receive. I went with TMJ Concepts. They have treated me with respect and kindness each time I would call their office seeking answers to all of my millions of questions. Most of all go with your gut, if you feel like it is the right thing to do then go with it. You will know if it is the right thing or not.

I also want to add that anyone who is in an abusive relationship to get out. Don’t stay. Seek help. You are not alone despite the fact that your abuser may make you feel like no one cares about you. I have lived through it and I understand what you maybe going through. Anyone who would like to get a hold of me to talk for any reason can contact and they will have my information.

Thank you for reading my story. It has been a very long journey for me and I can honestly say that I am the happiest I have ever been. The only issue that I am having right now is dentistry. Being that I am only able to open my mouth very little I need to have a lot of my teeth removed and get implants but am having a difficult time finding a dentist who is able to look past my tmj replacement and help me. Since my joint replacement in 2002 no dentist would help me so I am in desperate need of dentistry. I was even unable to get a simple cleaning so imagine what I am dealing with right now. Even so, I am happy and healthy, in pain but healthy.

Sending all of you a pain free day today!

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