While attempting to get the bite guard in my mouth, the technician noted that I had an apparent “protrusion” on the left-side of my face. We completed the x-rays and addressed the concerns with my dentist. After he completed a thorough exam, he stepped away to make a phone call. When he returned, he informed me he had made an appointment for me to see an Oral Surgeon for a panoramic x-ray and that I was to head straight over.
After completing the panoramic x-ray, I was informed to head to our local hospital for a CT scan, as something was “noted” on the x-ray that required further imaging. As panic began to set in, I managed to gather the strength to drive to the hospital for the CT scan. I was informed it would take 48-72 hours to get results. You can imagine my surprise when I received a phone call the next day from the radiologist.
A tumor was found in my jaw. One that my local hospital felt ill-equipped to manage and had taken steps to secure an appointment for me to see an oncologist at a world-renowned Chicago hospital. This encounter would become one that would stay with me, not just due to the trauma of what was to be discovered, but also due to the exceptional care that I received.
After an unsuccessful needle-aspiration biopsy, a surgical biopsy was scheduled. The biopsy concluded that I had a very rare tumor known as a Chondroblastoma. The tumor was about the size of a plum, and encompassed the entire left TMJ joint, a portion of the lower-left mandible, and a portion of the lower-left cranium. Over the next several months, extensive surgical plans were scheduled with a surgical team that included members from oncology, maxillofacial surgery, neurology, and plastic reconstructive surgery.
My first surgery lasted over 12 hours and involved removing the tumor, including the left TMJ, a portion of the TMJ condyle, and portion of the left mandible. These intense procedures required several facial nerves to be severed, while others were significantly damaged, causing permanent facial paralysis and facial neuropathy. To maintain stability of my jaw, it had to be wired shut, which also required insertion of a tracheotomy and gastric feeding tube.
My second surgery involved implanting a TMJ prosthesis, replacing a portion of the lower-left cranium with a titanium mesh plate. I also underwent extensive facial reconstruction. While this second surgery was shorter in duration, it nonetheless was incredibly intricate. Recovery included numerous follow-up visits, physical therapy to regain movement of the jaw, and learning to live with facial numbness and neuropathic pain. I wish I could tell you this is where my TMD story ends.
During my annual follow up visit in 2012, I was diagnosed with a giant cell tumor of the right-mandible. In March of 2024, after experiencing increased facial numbness and tingling, I was diagnosed with a fibrous dysplasia lesion of the right mandible. I struggled to come to terms with this news. How could I have three mandibular lesions that are unrelated other than to their physical location in the body? And yet, that was what I was told; it was simply a bad deal I was dealt.
If you are struggling with a recent or recurrent TMD diagnosis, do not take my story as “typical” for it is anything but that! Rather, I want you to know you are not alone. There are wonderful surgeons and a network of resources available. My hope is that my story can advance knowledge, understanding, diagnosis, research, and treatment of TMD. I wish to personally thank my amazing surgical team; you truly saved my life, more than once!