My Long TMJ Journey

 

Michelle’s Journey

 

As a preteen I was picked on by my brother’s friend for not having a chin. I had a huge overbite and could stick my thumb between my lower and upper jaw. Like most teenagers I received braces and was able to get my teeth straightened and headgear was used to correct my overbite. Around a year later I started having awful pain whenever I ate, and my jaw ached constantly. My bite was starting to regress even though I wore all my retainers exactly how I was supposed to. After meeting with the orthodontist, it was determined that we should plan for orthognathic surgery. I had four premolars removed and then my bite was shifted back to purposely create a larger overbite that surgery would then fix. At 18 before I even had my first surgery my jaw began to lock shut. I’d receive cortisone and lidocaine shots injected into my joint and then they would manipulate my mouth open. My oral surgeon was convinced my upcoming surgery would fix the problem. At nineteen I had the surgery along with a genioplasty to move my chin forward. A few months later my jaw was locking shut again. I had an MRI done and was told that I had osteoarthritis. It was then suggested that we do arthroscopic surgery to clean out the joints and get rid of adhesions. Not long after I locked shut again. At the time it was my right joint that was bothering me the most so then it was determined that I needed an upper osteotomy to free up space in the joint. A few months later the left side started locking so then I had the upper osteotomy on my left side too. Before the age of 21 my mouth had been wired shut three times by surgery. Somewhere during all this I had also had an arthrocentesis that was pretty pointless and had done physical therapy.  Not even a year later my mouth started locking shut again. At 22 I was told by the chief of oral surgery at the dental school that he had no idea how to help me and handed me a narcotics prescription.

 

I saw another oral surgeon in town who had an excellent reputation for helping TMJ patients. He was convinced that I needed another arthroscopy to clean out the joints so this was scheduled for the week following my college graduation. He also thought that once I healed from the arthroscopic that we should wait around a year and then perform another orthognathic surgery since my back teeth didn’t fully come together on my right hand side. Later he decided that if I could open and close we shouldn’t do anything else and leave it be. Less than 18 months later I started locking shut and yet again my oral surgeon didn’t know what to do with me and referred me to a younger doctor in town who was using new methods.

 I go and see a third oral surgeon and of course he recommends yet another arthroscopy, he’ll clean out the joints and he claimed to have some technique that would put the discs back in place and keep them from displacing. He gives me the bad news that while in the joint he’s determined that my right disc has a pin size hole, it could become worse or it is something that could potentially stay the same. Not even 3 months go by before I was locking shut again.

 At this point I’m 24 years old and have had 3 oral surgeons tell me they don’t know what to do for me. I was completely discouraged. The last oral surgeon recommended a colleague of his in California. I'm a newly married 24 year old, how am I going to California for a doctor?? While researching this doctor, my husband came across the American Society of Temporomandibular Joint Surgeons. We see that it is a pretty small group and make arrangements to see Dr. Roger Meyer in Atlanta since he was the closest to us. We take the images we had received from my last surgery and head to Atlanta. I was quite impressed as he gave me medication to treat my pain and he referred me to a rheumatologist to get a full workup and he referred me back to physical therapy. He told me I didn’t need more surgery. We followed back up with him and he was pleased that my rheumatology appointment didn’t find any issues with any other joints but he was disappointed with my PT progress and told me to try another therapist. I found another therapist and this time got some relief.

For the next several years I’d occasionally have my jaw lock but I had a good relationship with my primary care doctor and he’d supply me with muscle relaxers for when I would have a flair up and I’d eat soft food and tolerate the flare ups. Towards my mid 30’s after I had my 2^nd child my flare ups started becoming more and more regular. Then one day I was stretching my jaw and heard and felt like something tore, it made a sickening sound and I immediately had some of the worst pain I’d ever felt in my life. I knew Dr. Meyer had retired but I periodically would watch the ASTMJS list of specialists and knew that if something happened I wanted to see Dr. Bouloux who was also in Atlanta and not too terribly far from home.

 Dr. Bouloux immediately ordered an MRI and from that he said my condyles weren’t in great shape but he wanted to do arthroscopic surgery to clean out the joints and to get a better idea of what was happening inside the joint by using his scope. My right disc had a big tear and my joint was bone on bone and was also becoming severely disfigured from arthritis. While he could do surgery and put in a fat graft, he recommended replacing my right joint. At the time my left was arthritic and had a bone spur but my disc only had a pin sized hole and wasn’t causing me pain so we left it alone. After my right joint was replaced I felt like I had been given my life back.

Seven years later my left side kept feeling worse and worse so I finally make an appointment to go back in. I called January of 2021 and was given an appointment for April I asked for a joint replacement and he laughed and said we had to go through all the hoops and scheduled an MRI. Once he had the MRI he confirmed that I would indeed need my left side replaced. Everything moved so much slower because of Covid, getting the CT took time, getting the joint made took an extensive amount of time. I finally had the joint replaced in December of 2021. At that point my cartilage disc was not only torn it was in pieces and my joint was complete bone on bone. This surgery felt harder on me than the previous one. I was told my nerve was bruised and for the first few days I couldn’t close my eye on my own. As I was healing about three weeks out my pain started getting better instead of getting worse. I had pain up around my sinus cavities and went to get it checked. CT scan showed inflammation so I was diagnosed with a sinus infection and given antibiotics. I finished the antibiotics but yet the pain did not go away. I went to see the ENT and he sent me for a contrast CT. It showed inflammation but yet my sinuses looked clear. I was given more antibiotics. Before I could finish the antibiotics, I was at work and felt this electric shock in my face, it was so intense it took my breath away and caused my eyes to tear. I had my CT disc and gave it to my coworker as her husband is a neuroradiologist to see if he saw anything abnormal. He called that evening to let me know that I had two screws that were really close to my nerve canal and if I moved the slightest way it was sending jolts of pain from the nerve rubbing the screws. In April of 22 I had the two screws removed. It helped remove the jolting electric shocks that I had been having but some of the achiness, numbness and pins and needles feeling is still there.

 It’s now 2024 and I currently take daily Gabapentin, Lyrica, Nortriptyline, and Baclofen on a daily basis. My masseter muscle hurts most of the time. My surgeon decided I was a candidate for Botox and I had that done in December. It helped tremendously but now I can tell that the effects are wearing off. Thankfully my insurance covers it so I’m scheduled to have this done again in April. My biggest fear is what happens when my body becomes so accustomed to the Botox that it no longer works, what then. I’m 45 and worry what my pain is going to be as I get older. I know nerves heal slowly so my hope is that maybe they will continue to do more healing.