Patient Spotlight: Tara B.
It’s hard to remember a time when condylar resorption wasn’t a part of my life.
As a young child, I did not experience any jaw or bite issues. I’ve spent way too much time looking back on pictures from those early years, trying to piece together when this all started.
When I was 7 years old, in October of 1991, I had an accident during recess at school. I loved my gymnastics classes and wanted to show off a trick to my friends on the monkey bars. The next thing I remember, I landed on my face, and I was skirted off to emergency oral surgery. Given that it was over 30 years ago, I don’t have any records from that procedure, and don’t know what happened during it other than the extraction of a couple damaged baby teeth.
I just know that within a couple years after that incident, whether that was the cause or just an unfortunate coincidence, my face and bite began to change. By the time I was 10, I had a large overbite and my lower jaw was noticeably recessed. I started braces the following year in an attempt to fix this issue. My childhood orthodontist mistakenly believed that the issue was a “too big/too far forward” upper jaw, rather than my lower jaw being too far back. I had everything done during that treatment from premolar extractions, to headgear (two different types!), to strong elastics, and a weird appliance that the orthodontist called a bite plate. Visit after visit, despite my upper teeth being pushed back, my large overbite remained. In the meantime, I developed breathing issues and was tired all the time. I started drinking coffee when I was 13 and regularly had multiple cups per day to stay awake. I always felt like I was out of breath... and I started to feel intense pain in my jaw.
Around that same time, I started to have issues with other joints in my body. My feet and ankles had deteriorated to the point that I had back-to-back (left first, then right) reconstructive surgeries in my early teen years. I was told the issue was benign joint hypermobility syndrome (more recently, doctors have said I have hypermobile Ehlers Danlos Syndrome). I had a third foot surgery at age 17. Later that year, I begged to have my braces off - 6 years was more than enough! The orthodontist reluctantly agreed, and said that I would need double jaw surgery. After having 3 big foot surgeries within the past few years, I just wanted a break from surgeries and to go off and enjoy college, so I declined. I started to have issues with my bite again during my freshman year of college, but I didn’t want to have another round of braces as a college student, so I didn’t pursue anything.
In the following years, I sought help from various dentists/TMJ specialists, who mostly told me to eat softer foods and recommended a night guard.
Nothing helped much, so I just began to accept that this was something I would be dealing with in my life. After all, I knew a lot of other people with TMJ pain around my age. While I tried not to let the pain and functional issues get to me too much in my 20s and early 30s, it was mentally challenging to deal with my facial changes, and the way other people interacted with me due to them.
Airway and jaw issues became more mainstream a few years ago, and I heard about non-surgical jaw treatments in my area. It sounded new and different, and I was intrigued. A home sleep study led to a diagnosis of obstructive sleep apnea at age 35. I began treatment with an upper ALF (Advanced Lightwire Functionals) appliance and a lower orthotic/splint. Some of my symptoms improved at first, but then came back after a few months. I kept biting through the left side of the lower appliances, and the right side of my bite opened up. I had difficulty even chewing a banana. My migraines and jaw pain increased and I noticed that, despite the promises of the appliances bringing my lower jaw forward, after the two-year treatment, I actually looked more recessed than before.
I started to do my own detective work, poring over my scans and radiology reports.
Consults with other local airway dentists and orthodontists gave me additional pieces of the puzzle, but still failed to identify my main issue. So I connected with other patients on social media, and finally came across the idiopathic condylar resorption (ICR) community. Suddenly, it all made sense. I got the names of some surgeons who specialize in ICR cases, and finally got my ICR diagnosis about a year ago in 2021, at age 37. I’ve been in braces for just under a year now to prepare for bilateral TJR and Le Fort upper jaw surgery. I still don’t have a surgery date as of this writing - I need to finish the pre-op orthodontics (so much past camouflage work to undo!) before I get scanned for my new joints. I try to remember how much progress I’ve made in the past year with finally getting a diagnosis, and doing all the necessary prep work for my surgery, when the mental exhaustion from it all sets in.
It’s still hard for me to reconcile that it took decades to arrive here (as my surgeon says, I should have had this surgery at least a decade ago)… but for the first time in I-don’t-even-remember-how-long, I am hopeful for a real, lasting, positive change. In the meantime, I am doing my part to spread awareness of ICR, so that others hopefully won’t have to wait as long as I did for answers.