Patient Spotlight: Vee from Australia

It has been almost ten years since I was diagnosed with idiopathic condylar resorption, and almost three since I underwent complex orthognathic surgery. It has been a nightmare to say the least, but never did I anticipate that the experience of relapse would prove more destabilizing than condylar resorption itself. The only consolation I can give myself is that my experience may serve as a warning to others; to question everything and speak up.

My bite in 2018 before any interventions were performed.

My initial journey is one marred by confusion: why weren’t my teeth touching anymore, after I so diligently wore my retainer day and night? Desperate for an answer, I went from dentist to orthodontist and heard it all. ‘My jaw hurts too, when I’m stressed,’ advised one. ‘When I’m stuck in traffic, I massage my TMJs with my thumb’, stated another. Friends tried to comfort me by talking about their own TMJ pain, how their jaws would pop and click at times, but they didn’t understand that it wasn’t just pain—my face was changing too. I barely recognised myself in photos, and I began to look like a stranger amongst family. I was driven by the need for an answer, and when my surgeon told me my condyles were resorbing, I was relieved to finally know why. Although I reported constant, horrible, blinding pain, he assured me it wasn’t serious: ‘nobody has ever died from a bad bite,’ he stated matter-of-factly.

My surgeon asked me to wait, and I placed my faith in his approach. After all, he was the surgeon; he had seen condylar resorption before, and he knew what it looked like. He was the expert in the room. My condyles would ‘burn out’ eventually, he argued, and he’d surgically bring my upper and lower jaws back into their correct position. Six years went by until I was deemed ready for surgery: six years that I can barely remember, with pain so severe I’ve almost blocked it from memory entirely.

I wish I had been brave enough to put myself first and to argue against the inhumanity of waiting. I was so tired, and I just wanted my life back, whatever that took. I trusted in the process, and I let my surgical team take the reins. This was my first lesson, and one that took me years to come to terms with: question everything. Seek a second opinion, seek a third, and seek the compassionate approach you deserve. There is nobody better equipped to support you than a surgeon who understands you as a person, with goals, hopes, and dreams, who simply wishes to move on from a soul-destroying disease.

When my surgeon finally made the call that I was ready for surgery, I felt my patience was finally being rewarded. I adopted a distinctly positive mindset: this would be the thing that would fix me, once and for all. I pushed all of my fears to the back of my mind, and red flags went with them too. I didn’t allow myself any opportunity to feel nervous, nor to feel skeptical. I excitedly told friends of my upcoming surgery and filled out my calendar with milestone dates: 6 weeks of a liquid diet, 3 months until I could begin exercising again, etc. I was going to do this. Yes, I’d swell up like a balloon and I’d be in incredible pain, but it would all be worth it in the end. What I didn’t know was that orthognathic surgery wouldn’t fix the joints at all. It would be like building a house atop an unstable foundation, and it would all fall apart rapidly.

Return of my open bite after double jaw surgery.

Relapse is hard for me to talk about. I first noticed something was wrong mere weeks after surgery. My teeth just didn’t touch right. My jaw was elongated and knobbly where large cuts had been made in the bone. I felt strange and distorted like a Picasso portrait. I certainly didn’t look like me, whatever that was. My general practitioner, supporting me throughout the postoperative period, carefully listened as I talked her through these concerns. ‘You are right to be upset,’ she slowly reasoned. ‘Your face is your identity, it’s who you are.’ Who was I, then? I felt trapped between a disease and a poor surgical outcome. As I recovered, the stranger in the mirror became even more foreign. I tried to remain positive.

I brought it up with my surgeons and was told I was still swollen; if my bite was off, braces would fix it up down the track. Six months after surgery, with a solid bite, my braces were removed. Within a week a gap had formed between my upper and lower teeth, and my world came crashing down. Jaw surgery was the most traumatizing thing I had ever endured, and it had all been for nothing: I was back to square one. This was my second lesson: if something feels wrong, speak up. My disease had left me feeling so sad and small that when my orthodontist accused me of being complicit in my relapse—arguing that I simply wasn’t wearing my retainer often enough—I internalised it. When my surgical team proposed a revision orthognathic surgery, my rejection of it left me wracked with guilt. My previously optimistic mindset gave way to one of deep depression and hopelessness. I had reached a dead end, feeling there was nobody left to help me.

I often sit and think about how different my life would be if I had sought another surgical opinion; if I had fought for total joint replacement. Would I have healed and moved on? What would I be thinking about, without relapse on my mind all day? Where will I have travelled, what could I have achieved in my career, without the curse of chronic pain? I wouldn’t be explaining to friends that I need braces and surgery again, which fills me with a sense of shame. I wouldn’t have to explain how nobody in Australia can help me; that I would have to fly overseas for TJR surgery, spending my life savings (and then some) just to have a ‘normal’ jaw.

There’s a popular misconception that the Australian public health system can alleviate any ill, and it frustrates me to no end. Diseases like idiopathic condylar resorption fly under the radar, too rare in such a small population to warrant surgical specialization. Having finally found an American surgeon who could resolve these myriad of issues, my anxious mindset has now shifted to the costs. Beyond the financial aspect, I’ll be uprooting my life to recover in a country I’ve only ever seen in film and television. My future feels purely constructed of unknowns that I’ll have to confront head-on, but at least now I’m on my way somewhere. The journey is far from over, but I’m slowly getting to a someday where I might be me again.