|We thank Lisa for sharing the following perspective and first-hand experience with our readers.|
Over the last 20 years, I was unfortunately subjected to many surgeries due to my Temporomandibular (TMJ) conditions. I traveled across this great country seeking treatment for this extremely painful condition. I received many different opinions with vastly different treatment protocols. It was horrific to learn that I was in the midst of a debilitating condition that had very little scientific research or evidence-based medicine which could give me a sound treatment plan, one that would lead me out of my predicament. I found myself confused, lost and desperate for relief.
One theme that seems to be consistent across the country is that the surgeons are predominately male and the patients are largely female. My experiences brought sexism into the spotlight. I had oral maxillofacial facial surgeons who suggested I was a stressed-out young mother and this was mostly my fault. I also felt the conversations with these surgeons seemed to go more smoothly if I brought my husband into the equation.
A recent article interviewed Clark Stanford, DDS, Dean of the University of Illinois at Chicago School of Dentistry. The article states that it is estimated that 10 to 35 million Americans suffer from a TMJ disorder at one time or another with the largest demographic being pre-menopausal women. He believes this is the reason many women with a TMJ condition are overlooked. Dr. Stanford said, “There could be a component of sexism in clinician’s offices.” (Greenberg, Gary “Get Relief from Jaw Pain.” Newsmax Magazine, October 2021 pg. 88)
With the TMJ surgeries I had, I felt I was treated with very little compassion. My pain was ignored and I was told to “deal with it.” The first surgeon I saw suggested that I was mentally ill. He and the orthodontist would tell me to breathe when I came in, making me feel as though I was a psychotic crazy woman who was causing harm to her own body. They drove me into a state of depression and anxiety. The surgeons gave little care to the changes I watched happen to my face. After one of my surgeries, my lip became paralyzed. When I asked if the nerve would heal, I was replied with a shoulder shrug.
When I was admitted to the hospital after the major TMJ reconstruction surgeries, I found little help with pain management. The nurses did not understand the terrible pain these surgeries caused. They seemed more concerned about preventing me from becoming an addict than with lowering my pain so that my body could heal. The resident who was put in charge of my pain management in the hospital, gave me half of the morphine equivalent of medication that I was getting at home. This meant I was literally receiving zero pain management after a total joint replacement. I found myself crying to the nurses and pleading with them to let me die. I cannot express in words the level of pain I experienced with very little support.
Recently, I found myself in a new predicament. I was told that I might have endometrial cancer. The referral I received was to a male gynecologist at a high-rated clinic. I realized I was in a similar situation to my jaw surgeries; I was once again seeing a male surgeon who treated only women. I went forward with the surgery and to my surprise my experiences were vastly different.
The gynecologist was able to give me data about my condition based on what he saw on my ultrasound. There was a set protocol for my condition that he followed and it was based on scientific research. Imagine my surprise when I realized he was following evidence-based medicine, rather than the chaotic approach I experienced with my TMJ disorder and continue to experience. I had a biopsy which was followed by a surgical procedure.
The day of my surgery the nurses were welcoming as they got me ready for the surgery. I had a meeting with the anesthesiologist prior to the surgery. I explained the jaw issues I had and how I was scared the intubation would harm me. He was so kind, and promised me he would take great care and he would not harm me. My surgeon came and went over the procedure and discussed what we would do for pain. He again showed great compassion and assured me I would be okay. He told me he did many of these surgeries, but said he understood that no one wants to go through surgery.
After the procedure, I woke up in recovery. A kind nurse was there giving me medication before I could ask for anything. She brought me some heat packs for the pain and kept me comfortable. She made sure my husband was aware that I was awake and doing well. My surgeon came and told me what he saw and that he sent the tissue to pathology and we would review the results at my follow-up. The pathology showed normal tissue and a polyp. Again, my surgeon was able to tell me that, based on scientific research, there was a 90% chance the polyp would not return and I would most likely not have problems in the future. He told me if I developed certain symptoms to contact him. I felt relieved and grateful.
It can be inferred from my experiences with my two conditions that my treatment and care were on polar opposite ends of the spectrum. Even though the TMJ surgeons and the gynecologist were all male, I was treated in a dissimilar way. One surgeon treated me with respect and dignity as a human being while others treated me as a stressed-out woman who caused her own condition. I hope the oral maxillofacial surgeons can understand this and change their treatment of women. We desperately need research to find the reasons why more women get TMJ disease, and surgeons need to stop blaming this condition on women. I cannot imagine a man being blamed for causing a health condition. It’s past time to bring TMJ treatments and surgery into the 21st Century.
In the last couple of years patients have received some hope with the formation of the TMJ Patient-led Roundtable and the National Academies of Sciences, Engineering and Medicine’s (NASEM) yearlong study and report on TMJ disorders. Gregory Ness, DDS represented the American Association of Oral and Maxillofacial Surgeons at the NASEM meeting where several patients shared their story. He said, “To each of you, I say, I am sorry, I am sorry you continue to suffer, that we failed you in our promise to make you better not worse. I am sorry you heard foolish, ignorant, dismissive and carelessly cruel things from those that were supposed to care for you when you needed it the most. I am sorry that you had far more operations than one person should ever have, or that you very understandably don’t know who to trust…” (video link: https://www.youtube.com/watch?v=k7xXVdrB5pQ) As patients who have experienced injustices we hope for a future where patients are cared for in an equitable way with care, compassion, and an evidence-based approach. (National Academies of Sciences, Engineering and Medicine Consensus Study, Temporomandibular Disorders, Priorities for Research and Care, March 29, 2021)