TMJ Resources - Our Family - Patient Talk
My TMJ problems began on June 15th, 1986, two weeks after I got married. My husband and I were involved in a car accident. I had many injuries but what seemed to hurt the most was the left side of my jaw. In August 1986, I was admitted to the hospital for back and neck traction. After ten minutes of traction, the left side of my face swelled up. An oral surgeon was called and he sent me to another doctor who made me my first of many "bite plates." I also had several months of therapy. The pain was increasing. Finally, I was given an MRI. When I was given the results, I was actually relieved to find that I had a dislocated disc in my face. I know that sounds strange but you have to imagine how frustrating it is to know there is something wrong with you, but no one believes you.
I was sent back to the oral surgeon, who operated on me in December of 1986. The surgery went well until several weeks later. I sneezed and I felt and heard a pop on my left side. The pain started right away. I also was starting to have problems opening my mouth. I went back to see my surgeon. He wasn't there, so I saw his partner. He told me there was nothing wrong with my jaw, after all, the surgery was a success. But he sent me to a dentist who specialized in TMJ therapy.
I was under the "TMJ specialist's" care for many, many months. The pain was getting worse. Now I could barely open my mouth. I had to flatten a straw just to fit it in my mouth. This so-called specialist decided to give me trigger point injections in my face, neck, and shoulder to try to unlock my jaw. After more than a dozen shots, he decided to use his bare hands to "unlock" me.
I never went back. I went to see another oral surgeon. His face actually lit up when he saw my x-rays. He told me I needed total jaw replacement. I was scared. He promised me I would be pain-free and I was thrilled, but cautious. I wanted to know more about this total joint called VKII. He said it was the joint of the future! It was coated with a wonderful product called proplast. This joint was going to change my life (it sure did). I called Vitek for information about their joint. They refused my request and called my doctor! Boy was he mad! He asked me why I called. I told him I wanted more information about the VKII. He said, "you wouldn't understand." I told him that I'm not stupid and he said that the information was too technical for someone other than a doctor. I asked him to let me talk to someone else who'd had this VKII in them. He referred me to another one of his patients. She talked of something she called "plate aches." I asked him about this and he said she was a little "ditzy." I was so desperate at this point that I agreed to the surgery. Hey, I was going to be pain free!
After my thirteen-hour surgery, he came into my room at the hospital and told me that I would never actually be pain free, but I would now be able to open my mouth. The pain wasn't so bad so I decided to try and deal with it and go on with my life. Two months after my surgery, I was leaving physical therapy when I had an intense pain on the left side of my face. I reached up to rub my head when I felt the lumps sticking out of my head. My therapist sent me to the emergency room. After taking x-rays, the emergency room doctor told me he thought the lumps were screws migrating out of my implant. He said he would call my surgeon. The next thing I knew, he was handing me the phone. It was my surgeon. He said to me, "What are you doing in the emergency room? Don't you know how bad this makes me look?" I told him, "the screws are coming out!" He said, "No they aren't. Get out of there and make an appointment to see me." I did as I was told. I saw him in his office. After looking at my x-rays, he said the joint was fine but that he wanted to operate on me tomorrow.
The next day, while waiting to be prepped for surgery, my doctor called me out to the hallway. He said, "be prepared to wake up from this surgery without the joint." I was shocked. After surgery, he told me that the joint was fine. He "trimmed it back" a little and took the screws out. He also said, "I think we need to disconnect your temporalis muscle. That's what's causing your pain." I said that was fine and he did the surgery.
Now I was also having pain on the right side of my face. After several months of complaining of pain on both sides, he decided to do a "scape" on my right side. After that surgery, he told me I was right, there was a problem. My right side was now displaced. I then began a series of mouth splints and therapy. After months of this, with no results, he decided to try to fix my right side. I had surgery again.
The pain continued and was getting worse. He told me I would have to accept the pain on the left. It was all part of having an implant. Then I got pregnant. I had a baby girl. I was in so much pain that my husband would have to put the baby in a portable crib next to my bed so I could take care of her from my bed. I had to stop breast-feeding because it hurt too much to hold her. I had to prop bottles up with pillows just to feed her. I couldn't carry her because I was too dizzy. I then got pregnant again. I was so upset. After all, the pain was so bad that I could barely take care of one child, let alone two. I also was desperate to get treatment for my jaw. During both pregnancies, I kept in touch with my doctor. I told him I was in extreme pain. He said to come see him when I wasn't pregnant. After the birth of my second daughter, I made an appointment with him. I told him I was in terrible pain on both sides. He again said he couldn't help me with the left side. I would have to learn to live with it. After all, at least I could open my mouth. He agreed to x-ray the right side. After looking at the x-rays, he asked my if I had injured my left side where the VKII was. I said, "no, why?" He changed the subject and ordered a cat scan for the right side. About a week after I got the cat scan, he had his secretary call me at home. I was scared, I assumed there was something wrong with the right side. I asked his secretary why he wanted to see me. She wouldn't tell me. She said I would have to come in and talk to my doctor. Now I was really nervous.
I went to his office. He told me, "we have a little problem. Your jaw joint has been recalled by the FDA." I was stunned! He gave me some papers to read and left the room. When he came back in, I told him, "I've been complaining about this joint for over three years. I have all of these symptoms on this paper except for a giant cell reaction." I told him I didn't know what that was. He said, "don't worry, this can only cause problems in a 'loading' jaw joint." He said, "if you had a giant cell reaction, you would be in horrible pain." I said, "I've been in horrible pain since you put this thing in me." He said, "no you haven't." I never went back to see him again. My next problem was to find a new doctor. It took me eight months to find a doctor who would agree to see me. As soon as I mentioned that I had a VKII, no one would agree to see me. I called the medic alert number that I was given by the FDA. They told me not to worry. "There has never been a problem with a VKII," they told me. I asked them, "then why has it been recalled?" They couldn't say why.
The doctor who finally agreed to take the VKII out said he first wanted to call a doctor friend to discuss the procedure. The next thing I knew, he refused to take it out. He said his doctor friend said there had never been a problem with a VKII. I asked him who his friend was. He told me it was Dr. XXXX. I asked, "Isn't he the one who designed the implant?" The doctor wouldn't answer me. So I called Dr. XXXX, who said there was nothing wrong with the VKII. I found another doctor at the University of XXXX. He told me I needed to have it removed right away. I decided to try to have a rib removed and to have a bone graft done.
It took over eight hours to remove all the proplast. My new doctor said my skull and jaw bone was so infected that he couldn't and wouldn't do a bone graft with the rib bone he had removed. He said my bones in my face were as soft as oatmeal. I also had two giant cell reactions. He told me I would have to wait and see if the bones would heal enough before he could try something else.
While I waited for the bones on the left side to heal, I insisted on another scape for the right side. The pain was terrible. He agreed to do it. After he put the scape in, he saw that my condyle had worn into a point. He said it looked like a knife. This sharp bone had shredded my disc and cut the muscles in my face. He smoothed the condyle and stitched the muscles. He couldn't save the disc.
Meanwhile, I had my immune system tested. My family doctor said he had never seen anything like it. His partner asked me if I had been treated for HIV (I had negative counts). Next, I had a lymph node removed from the base of my throat. Proplast strikes again! I wen back to my oral surgeon and he said that I had a new problem. Periodontal disease! He said from all the clenching I had worn my jaw bone down. I was now in danger of losing my teeth. I needed periodontal surgery on my whole mouth! I can't describe the pain of this surgery. I had to go four times. The pain and pressure on my jaw was unbearable. But I had to try it and save my teeth. Five are diseased and one was pulled by my surgeon. What a treat! Imagine having a doctor pry a tooth out when he could barely fit the instruments into my mouth.
I've also, at this point, noticed that my face was starting to look strange. I looked like a freak! I had no chin! My doctor said it was because of an open bite that I had developed due to the fact that I didn't have a condyle on the left side. I hated to go out of my house. I felt everyone was staring at me. Finally, after looking like this for almost two years, I was going to have surgery! I wanted my face back. I agreed to have an all metal "Christensen" joint put in. The doctor agreed to also look in with a scape again on the right side.
When I woke up from surgery in my hospital room, an intern came in and told me that the joint replacement had gone well but the condyle had worn into a point again. He said that when my surgeon tried to smooth it down, it had crumbled! I started crying, I was so upset. I had waited nearly two years to "get my face back." Now I was right back where I started from. My surgeon told me he was relocating to Boston and was going to give my case over to his mentor.
When I went to see this new doctor, he informed me that I had an acrylic head Christensen's joint. I told him he had to be wrong because I had insisted on an all-metal Christensen's due to the fact that I felt the acrylic head joint was junk. I had talked to too many people that had them taken out because they cracked. He told me not to worry. I was furious. The previous surgeon called me up and apologized. He said he must have misunderstood my preference for the all-metal joint.
Soon I had more problems. I was having bad pain on the left side with the new joint and I developed a severe open bite. My new doctor started to take me seriously when I told him I was afraid to sleep. I said that whenever I fell asleep I would wake up gasping for breath. He said that I had developed sleep apnea because of the open bite. I needed to have a total joint put in on the right side now! I wanted to have the joint he had helped design put in me. He said I needed to wait two months for it to get the approval it needed. I waited. After two months was up, I called and said I wanted to be on the program to get this new joint in. I was told it had been delayed once again. I was so upset. I couldn't wait any longer. I could hardly breathe. I agreed to have an all-metal Christensen's implanted. I also wanted the acrylic head joint replaced.
The doctor agreed. He felt it would be too dangerous to wait any longer. He was afraid I might stop breathing! He put in two all-metal joints. He said the acrylic head had twisted forty-five degrees!
I now am being treated for two compressed nerves on the right side of my face. I've had three series' of nerve block injections. The last treatment I had caused me to have severe dizziness. The room was spinning and I was really scared. I didn't know what was happening to me. My doctor said I had had a reaction to the medicine he'd injected. He has told me he won't inject me anymore. I don't know what to do either. I need help.
My life is so messed up. I hate telling my four and five year old daughters that Mommy can't play with them because I hurt too much. My five year old just started kindergarten. I was very upset because her homework assignment was to have mommy read twelve books a month to her. I can barely read without going into severe pain. I had to buy her books that came with cassettes so that she could complete her homework.
I never sleep. The pain is too severe! I used to ride motorcycles with my husband. I can't do that anymore because it hurts too much to wear a helmet. Due to a damaged nerve during one of my surgeries, I couldn't close my left eye. This caused my eye to dry up, which caused my cornea to be scratched. I can't wear a contact lens in this eye and I also can't wear glasses because they are too painful. Therefore, I can only see out of my right eye. My hearing has also been damaged because of excessive swelling that puts pressure on my eardrums.
Let's talk about sex…. What sex?! It's not very easy to enjoy sex when you're in constant pain. I haven't passionately kissed my husband in almost ten years! It hurts too much. I'm lucky I have an understanding husband-not many men would put up with what my husband does. I haven't slept in bed with him in years. Every time he rolls over, it causes me pain. I sleep on the couch. My husband always says to me, "It isn't easy being Ellen." God, I'm lucky to have my husband in my life. A lot of people have lost their spouses…. Who can blame them for leaving? It's a lot to put up with. Every summer, my husband and I take our children to Wildwood, New Jersey for a week. You can't believe how I dread this and look forward to it at the same time. You see, with TMJ problems, you can't plan ahead for anything. You never know when you'll be sick to your stomach because of pain or have a blinding headache that may last for five days straight. But once a year, I pretend that I'm not a TMJ patient. I need to act like a real mother to my children. After I get back from bringing them to the beach and the boardwalk, I tuck them and my husband in bed and sit up all night crying because I hurt so bad. But I need to do this for me as much as for them. They don't deserve a mother like me….
I miss yawning! I haven't enjoyed a good yawn in years. Sneezing scares me to death! It's so painful. The only good thing to come from all this is the support I get from other victims. For years I thought I was the only one. I've found such special friends because of The TMJ Association. You don't know how many times I thought I was going crazy. Years of being told it's all in your head will make you think that maybe there is something mentally wrong with you. It's only because of the love and support from my family and my friends in The TMJ Association that I haven't taken a gun and blown my brains out.
I know that sounds a lot like self-pity, but I can't help it. I miss my life. It tears me up to have my children ask me to play and I just can't sometimes. It's so good to talk to other patients who understand. It's funny, the first thing my doctor said to me after my last surgery was, "Don't you agree that your support group causes mass hysteria and causes you a lot of grief?" I sat up in bed and said, "absolutely not! The only people including the doctors and the FDA who have ever helped me and were honest, have been The TMJ Association!" I also told him, "if I had cancer or some other problem, I would be encouraged to find a support group. What makes TMJ any different?"
Ellen (USA)
