After a decade of having no answers, and worse, being misled by doctors - my usual - I finally know what is wrong and how to fix it. Let me go over my history suffering from jaw and neck pain, hopefully connecting with anyone still searching for answers in their own journey with chronic pain.
-In high school I noticed clicking in my jaw. Every time I yawned I'd have to crack my joints back into place. I felt clicking and popping when I ate but also sometimes from doing nothing at all. My psychiatrist at the time - the same doctor who misdiagnosed me with Bipolar at age 8 and put me on medicine that led to 15 years of suicidal thoughts and obesity - diagnosed me with OCD (Obsessive Compulsive Disorder) and told me this concern was only in my head. Read more about my story with misdiagnosis and transformation of my mind, body, and soul.
-Fast forward to almost 10 years later and the pain is unbearable. I no longer have clicking or popping because my TMJ (Temporomandibular Joint) discs have been completely degenerated. I am in agonizing pain every moment of every day and can only schedule a couple hours at a time of play because I have to make it back to my freezer with my ice packs. At this point I have tried acupuncture, botox, anti-inflammatory and CBD microdosing, physical therapy, chiropractor, rolfing, medical massage, two different mouth guards and seen many specialists in orofacial pain, neurology, spine, eyes, dentistry, medical massage therapy and more but nothing is working and nobody can pinpoint the problem. I will note that while many people suffering from TMD (Temporomandibular Joint Disorder) get told over and over that it's in their head, that only happened to me with my childhood psychiatrist and with a concierge doctor in Los Angeles who told me it was built-up trauma. If you are being told that your TMJ pain is in your head but you believe there is something physically wrong, read on to find out exactly who to contact for help.
When the pain is uncontrollable. - still no answers.
How revealing is your social media? - honesty.
Powering through. - coping.
Life reflects what we're searching for. - more coping.
-Finally, in the summer of 2021, I went to Boston, where I'm from and where my parents still live, for 3 months to work with Dr. Ratti Handa and try to find success with her team. It was there I learned more about The Breathe Institute and Dr. Soroush Zaghi. I started with a mouth appliance that got refit every couple weeks to fix my bite. I also had weekly sessions of Myofunctional therapy and eventually, in July of 2021, I underwent tongue-tie release surgery, a frenotomy. I do believe this mouth appliance fixed my bite and that tongue-tie surgery was necessary even though neither fixed my pain. I did see a change in mobility in my neck and shoulders post-frenotomy. I believe in these steps as preparation for surgery just as they were intended to be. Dr. Handa set me up with the surgeon from The Breathe Institute, Dr. Coppleson, when I got back home to Los Angeles. The information I received from him was that my airway was way smaller than it should be and he could fix that but he didn't believe surgery would help with my pain. He said there was nothing anyone could do for me and that I should "try physical therapy."
Finding my window of hope through chronic pain. - progress but no change in pain.
-December 2021 I met with an orthodontist in Los Angeles, Dr. Hang, who connected me with the surgeon in Dallas, Texas who will change my life forever. While Dr. Hang had a different vision for the work I needed on my mouth, he was able to understand my problem and guide me to the proper solution. Dr. Hang wanted to expand my palate as much as possible before surgery because he believed that would provide the most relief but in the end my surgeon thought it made more sense to leave my bite the way it was. My bite was actually good, possibly because of the appliance Dr. Handa provided. Changing my bite would have led to more pain and more time and money wasted. Not to mention it would have made the surgeon's job more difficult. I ended up getting my braces removed after those 2 months and getting to spend 4 months without braces at all.
Brace face and saying goodbye to chronic TMJ pain forever. - right surgeon, wrong orthodontist.
Sticking up for myself. - switching orthodontists.
Climbing roadblocks for better views. - more coping.
-In February 2022 I set up a zoom with Dr. Larry Wolford in Dallas, TX. I had never talked to anyone more knowledgable about what was going on in my body and how to fix it. To sum it up, my jaw grew wrong, most likely from a tongue-tie at birth. Because of the structure of my jaw, my temporomandibular joints grinded bone on bone anytime I moved my mouth since I was a baby. My discs had completely worn away on both sides and on top of arthritis in my joints, the inflammation caused my styloid process on both sides of my face to grow all the way down my neck into my shoulders, a rare disease called Eagle Syndrome.
-In April 2022 I went out with my mom to see Dr. Wolford in person. I met with real, live success stories right there in his office. People who had gone through what I am going through and came out the other side PAIN FREE! I was FINALLY where I needed to be and Dr. Wolford is going to save me.
WARNING: Ignore your pain and you will suffer. - learning about Eagle Syndrome.
I view my clouds as art. - more coping.
How I cope with uncertain times. - more coping.
Knowing now that I needed total joint replacement it was a waiting game until I could finally undergo the surgery that stood between me and my pain-free life. My custom TMJ prostheses would take 6-8 months to prepare and I would need a few months of braces before surgery to get into the wires required by my surgeon. I went to Snow Orthodontics in Agoura Hills for my braces, which they were able to finish in less than three months to beat my prostheses arrival. This week I got the call I have been waiting for! My joints will be delivered November 10th and I AM SCHEDULED FOR SURGERY November 15th!!!! I will be updating this page on my blog with everything. The preparation, the process, the healing. Juices, smoothies and other recipes that get me through the 6 weeks of liquid diet. Most importantly, I will be sharing authentically the challenges and hopefully successes of this journey. For now, here are my scheduled procedures and my coping methods.
Making my way through the darkness.