I’m laying all my cards on the table to start this blog, by attaching my story of Temporomandibular Joint Dysfunction by sharing the transcript of my presentation from the National Academies of Medicine conference in Washington DC this year. Take a tour of what it’s like to navigate a medical mystery maze for decades.
When I was a kid, I didn’t know the time spent being dragged to every specialist my mom could think of, would culminate with me standing up here advocating for change. I’ve lived with this “invisible illness” that stares me back in the face every day and kicks me in the gut, for more than 30 years. My hope is that future generations of patients are spared the pain and torture I endured.
As an adult, I am forced to make room in my life for the pain and residual effects of my years of surgery, I want to thank you for allowing me to share my experience, explain where I find my strength, and give you hope that real change in the perception and treatment of TMJ can improve the lives of millions of people.
It makes sense that patient advocacy has become my purpose, because my experience tells a compelling story about how this disease invades every aspect of my life, and my goal is to explain this reality in a meaningful and educational way.
When I think about what TMJ has cost me, I add up the actual dollars spent along with all of losses and sacrifices. The total cost of this illness includes expenses, like lost time, damaged relationships, self-esteem, mental health, shattered career goals, and distrust in doctors and the medical profession.
I can’t get back the years spent scouring the internet, reading medical journals and consulting with doctors for 2nd, 3rd and 30th opinions. The endless hours spent in waiting rooms, hospital beds, arguing with insurance companies… I can’t get back the time missed with my only child. I can’t turn back the clock and sing her to sleep or read her a bedtime story. I missed those bonding experiences because my jaws were wired shut every year from the time she was born until 2 months ago.
My 11-year-old daughter, Hope, grew up quicker than her peers because she had to learn to speak up at a young age. She was a ventriloquist and I was her dummy. She was my VOICE!
I remember taking her to see a Broadway show after my 2015 surgery to celebrate my hospital discharge. The kid in the seat behind me was kicking the back of my chair, so my 7-year-old daughter went up to the usher and said, “my mom’s mouth is wired shut so she can’t talk, but we need new seats because I don’t want the kid sitting behind us to hurt her face.” As a mother it is my job to look out for her, but instead my little girl spent years looking out for me.
It would be an understatement to say that I spent a lot of time in hospitals and doctor’s offices, but time constraints prohibit me from giving you a comprehensive list of every appointment and procedure. Here is a summary of my surgical timeline.
In 2011, Dr. Piper told me that I needed an operation that he doesn’t perform, TJR. He gave me the names of a couple of his colleagues. I went to see Dr. David Hoffman in Staten Island and Dr. Larry Wolford in Texas, and I tried my best to raise the $65,000 for either of them to do the surgery, but I couldn’t come up with the fee. Dr. Hoffman suggested that I find a “sugar daddy to fund the procedure.” His exact words were “you’re a pretty girl, I’m sure you can find a guy to pay for it.”
The idea of pimping myself out for a set of new jaw joints was beyond demoralizing. Here I was, a law school graduate, and my only prospect for healthcare was prostitution. I told this story to Dr. Piper, and his response was, “he has a strange sense of humor, but he’s a great surgeon.”
From 2012-2014 I searched for a surgeon who accepted my insurance and was willing to perform a total joint replacement surgery. Each doctor suggested a treatment plan that they believed was in my best interest, but without any standard of care, how was I to know which plan the right option.
I felt like I was a guest on the game show “let’s make a deal,” Monty Hall stood in front of me impatiently asking me to choose a door. What was behind door number 2, was it going to be a shiny new car or a pile of garbage. As a patient, I didn’t know which door to pick, so I ended up with no relief and lived with unrelenting pain for years.
My days were spent researching every doctor I could find in NY who claimed to specialize in TMJ, but I ended up overwhelmed and disappointed with my prospects.
I then met Dr. Eduardo Rodriguez at NYU, the surgeon who performed the most extensive face transplant. He agreed to accept my insurance as payment, but he insisted on doing rib grafts even after I told him that every other doctor I met with told me they wouldn’t work. After two sets of resorbed rib grafts and two sagittal split osteotomies, I was left with an anterior open bite, nonexistent condyles and no other options.
But I couldn’t give up. He mutilated my face, and I couldn’t live another day like this. The options were either suicide or one last stab at finding a reputable surgeon. So, I kept my promise to Hope that I wouldn’t give up, and I found Dr. Pushkar Mehra in Boston.
In 2017, Dr. Mehra planned a staged surgery. On Sept 9, 2018 he scooped out what was left of the rib grafts and scar tissue from my jaw joints to make space for the prosthetic joints. He performed lower jaw surgery and wired my jaw shut using intermaxillary fixation through the gums. In January 2019 he completed a LeForte 1, double TJR with TMJ Concepts. So, here we are, I am just 2 months post-op from Total Joint replacement.
This was just a glimpse into my surgical journey. Please make no mistake, I am not a unique patient, consider my case a typical story.
The cost of surgery isn’t something you can budget for. Because some of the things I had to give up are priceless and can’t be quantified. My relationships suffered…
FRIENDS: There are only so many times that friends send invitations that you keep declining before they stop including you. It’s hard to keep friendships when you can’t eat, talk or make plans because you just don’t know how you are going to feel.
SELF-ESTEEM: My diminished social circle took a toll on my self-esteem because I couldn’t even keep up with my friends in a virtual world. In a social media universe, Instagram, Facebook, and Snapchat are centered on visual content. In this selfie-driven world, I keep telling myself that I’ll start taking pictures when my swelling goes down, when my stitches are gone, when my braces come off, or when my face is symmetrical. But the years fly by and the pictures of me are few and far between. I have plenty of close up shots of surgical screws, and wires, and lots of CT scans with my name typed in the upper left corner. But it’s no fun to pose for a picture when I feel like a monster.
Most of my friends are spending their time and money on Botox and Facelifts, while I am just trying to get my left eye to close and not drool all over my kid’s homework. My standard of beauty is warped, and my self-image is skewed.
CAREER: Constant leaves of absence from work for surgery made it hard to compete for upward mobility in corporate America. My disability was the glass ceiling in the way of my career goals. The pain got so bad that I eventually had to stop working and file for permanent disability. When I stopped working, the days alone at home took a toll on my mental health because I was isolated from the rest of the world which caused depression and despair.
MENTAL HEALTH: My emotional well-being takes a huge hit after each major surgery. Whether it’s the result of post-op depression from anesthesia, isolation, pain from recovery, anxiety about the surgery costs, the effects of TMD on my mental health are real and crippling.
• During one visit to the ER when asked to rate my pain, I mistakenly said on a scale of 1-10, it’s suicidal pain. I was whisked to a holding area for the psych ward and involuntarily admitted as a danger to myself.
MARRIAGE: My husband became my caretaker which blurred the lines in our relationship. One of his tasks was to pick up my prescriptions, and I was running out of Pain meds before my refill due date. My pain management doctor suspected that my husband taking my medication. Without sharing the unflattering details, I will just express that this breach of trust in a relationship is unforgiveable. I spent days in agony because there were no pain pills left, and I felt violated because the man who watched me writhe in pain let me suffer to feed his own addiction. I was forced to leave the marriage. I didn’t want to, but the trust had been damaged beyond repair.
FAMILY: While I was receiving treatment at a facility specializing in trauma, a psychologist unschooled in TMD labeled my mother with Munchausen Syndrome By Proxy. He said a mother wouldn’t subject her child to so many surgeries unless she was doing it to get attention. This theory drove a wedge between me and my family because I began blaming them for my condition. Turns out that it was all manufactured to justify a theory that I was drug seeking addict rather than a chronic pain patient. Professionals without sufficient understanding of chronic pain can cause bigger problem than already exist in a family struggling with health problems.
“POSSIBLE COMPLICATIONS”: When I sign the informed consent before a procedure, I hope that the worst-case scenarios never come true, but the side effects of all the surgeries add up to a less than normal existence. Here’s a short list of the things I live with. So, when you tell me how great I look, consider that I have numb lips, a frozen face and a brow that doesn’t move, my eyes don’t completely close, and I drool non-stop. I have a post nasal drip, Dry eye which causes tears to run down my face, electric shocks that go off in my face as damaged nerves try to regenerate, stitches that spit out of incisions, scars, scars, and more scars, and unpleasant side effects to my meds.
LOSING TRUST IN THE MEDICAL COMMUNITY: From 2008-2009 My father-in law was the president of the American Dental Association while I was seeking a surgeon to perform Total Joint replacement. He didn’t have any knowledge about my condition and he couldn’t think of one colleague or dentist that might be able to help. I traveled to all of the dental conventions with him…but no one had any interest in hearing my story.
Dr. Piper diagnosed me with CRPS, and my pain doctor Dr. Marcus said that its impossible for me to have this disorder. I am not sure who to believe. All of these doctors refuse to communicate with each other about my case. How can I make a healthcare decision when none of my physicians will come to a consensus about the best way to treat my condition?
Every single oral maxillofacial surgeon I met with gave me a different opinion about how to rebuild my jaw joints. Some of them tout the benefit of using fat grafts around the prosthesis, others insist on staged surgery while others claim its best to doing it all at one time, some say wire the jaw shut after surgery with a splint while other says no splint and no wires, one doctor told me that I had to hire a separate plastic surgeon to close my incisions. One doctor said that surgical braces are unnecessary, and another said that I would require two years of orthodontics before surgery. Am I a better candidate for a stock joint or a custom fitted prosthetic.
Guys, what is the standard of care? Or is it up to the patient to develop the standard of care out of the chaotic recommendations from professionals who aren’t even TMJ specialists. Because there is no such thing.
MY HOPE FOR THE FUTURE
My hope for the future is to diagnose and treat TMJ holistically by assessing the entire body. I had to put all of the pieces together on my own to learn that my psoriatic arthritis was a contributing factor to my TMD.
In the early 90’s psoriatic arthritis was a newer diagnosis. If I been referred to a rheumatologist early on, some of the joint damage may have been. The issue with TMJ is that dentist only treat from the neck up and rheumatologists and orthopedists only treat from the neck down. But TMJ is a complex joint that requires the expertise of the dental community and the medical community working in tandem.
My hope for the future is that when someone says they have TMJ, people don’t look at them like they are crazy. That the ADA or AMA will designate a specialty for TMJ research and training with a standard set of diagnostic tools to safely assess treat the condition in a non-invasive manner.
TMJ patients deserve the same level of sensitivity that we treat people with other craniofacial deformities and disabilities. TMJ patients suffer from stigma of looking different because of nerve damage and asymmetrical jaws, underbites, overbites, crossbites, open bites and gummy smiles, but we don’t expect the world to be sensitive to the pain associated with looking different and feeling pain. jay Leno suffered from years of pain due to his jaw and he was fortunate enough to make a career out of his trademark elongated chin, part of his persona includes making fun of himself, but I hope that TMJ sufferers aren’t forced to be the brunt of the joke going forward. TMJ deserves a chapter in the textbooks alongside other craniofacial deformities.
I am not the same girl that I used to be. Pain changed me. I have lost trust and patience for a lot of people who I used to count on. For a while my dad convinced himself that I was simply a product of New York- I had been toughened up by the big bad city.
But as time went by and the surgeries piled up, he understood that my bitterness came from a deeper place. I was once the girl with a reputation for being the funniest one in the room, and now people walk on eggshells around me because I am fragile, bitter and angry. Please forgive me if I seem prickly, the truth is that I am really just scared and frustrated.
My hope is that when people suffering from pain due to a deranged TMJ joint seek pain relief that they aren’t labeled as drug addicts and judged as junkies. I don’t take pain medication to get high. I take it so that I can get through my day.
My hope is that therapists, doctors and dentists are schooled in the devastating effects of this condition so that they can recognize a patient who is contemplating suicide. I think about suicide a few times a week because my quality of life has diminished to the point that I don’t have much to look forward to.
All the things I loved to do are no longer an option. I have been asked by family and friends, what would happen if you didn’t have another surgery, and the answer I give is…I would die. Either I would suffocate from my airway being cutoff, starve from not being able to eat or kill myself from the unbearable pain. But to say that this condition isn’t life threatening means that we aren’t being taken seriously. The dire consequences of treatments performed on patients without adequate scientific evidence of their efficacy is catastrophic.