Patient Spotlight: Ashlyn Powell
“Idiopathic condylar resorption (ICR)”...
If you would have asked me what that was 6 years ago, I would have had no idea. I would soon come to realize what a huge impact ICR would have on my life as a young woman -- physically, emotionally, and mentally. When I was twenty years old back in 2016, I began having occasional cracking in my right TMJ. It would happen in the mornings when I woke up, I would be so tight, and I would have to force my jaw open just to open my mouth - resulting in a crack that could be heard from across the house. This cracking turned into soreness, which turned into facial fatigue, then all-out pain and dysfunction by the time 2018 hit.
My lower jaw was slowly receding and I could hardly recognize myself in the mirror. I wondered, “Am I going crazy? Am I seeing things?” There were many days of being unable to eat dinner with my family because I couldn’t chew what was prepared. Many days of missed social events because my headaches were getting so severe. Many nights where I couldn’t sleep because even just laying on my pillow was too much pressure for my deteriorating jaw to handle.
After multiple dead-end visits to my dentist and PCP, I sought out an opinion from my ENT after a ten-day headache induced from my jaw. He examined me in his office and told me that he thought my issues were originating from my TMJ. He said I needed to see an Oral Maxillofacial surgeon and referred me to an OMFS that specialized in conservative TMJ treatment.
When I arrived at my OMFS appointment in April 2019 and told him that I had been having TMJ pain for 3 years, he was shocked that I hadn’t found my way to him sooner. Little did he know what I had already gone through just to get there (dismissed from my dentist and PCP as being stressed).
My ICR at its worst stage before surgery.
He did a CBCT scan in the office and then came back to
review the results with me with a perplexed look.
He told me, “You have a heart-shaped condyle, I have never seen this before.”
My heart-shaped right condyle versus my left condyle.
I asked him what it meant as far as treatment, and he told me that he wanted to try conservative measures first. This included splint therapy, physical therapy, ultrasound therapy, steroid injections, and an arthrocentesis on my right side. After 6 months with no relief, my OMFS admitted to me that the only thing he thought would fix my resorbed condyle was a TMJ total joint replacement (TJR), and he set me up with a colleague that was trained to perform the TJR surgery.
My visit with this TJR surgeon in October 2019 was exciting and scary all at once. I was excited to potentially have an end to the pain I was living with every day, and terrified of what TJR surgery would be like. He discussed with me in further detail about how my right condyle was very resorbed, but that my left condyle was also flattened on the head and had a subluxating disc according to my MRI results.
This is when I officially received an ICR diagnosis.
He felt it would be best if we proceeded with bilateral replacements, and he would also perform a LeFort type 1 osteotomy at the same time to create a harmonious bite, close my slight open bite, and advance both my upper and lower jaws. Within a week I was getting my CT scan taken for the fabrication of my prosthetic joints!
February 19th, 2020, I rolled into the operating room for my life-changing surgery in Charlotte, NC. Surgery lasted 8 hours with a team consisting of my TJR surgeon and two assisting surgeons. I had no perioperative complications and I stayed in the hospital for 4 days. When I spoke to the team after surgery, they said my joints were much worse than they had anticipated from the scans, and the joints had become fibrous and were hard to remove.
I had arch bars and was banded for 6 days, and the arch bars were able to be removed at the three week mark. Everything went well, from a surgical standpoint, and my new joints were finally in and ready to be rehabbed. TJR recovery was one of the toughest times of my life. The pain was unsurmountable, the swelling was very intense, and it seemed that no matter how many pain pills I took, it was never enough.
By the end of the first seven to ten days, it was much more manageable, and I was able to leave the house a bit. I started physical therapy at the one-month post-operative point with a fantastic physical therapist who had a history of working with my surgeon’s other TJR patients. I worked my way up from an opening of 26mm at one week post-op to an over 45mm opening.
Day 3 post-op in the hospital.
Post-op scans after arch bar removal.
As months went by, swelling subsided, my function improved, and my pain got better. I finally felt like I had reached a light at the end of the tunnel, until…
Shortly after my TJR, I began seeking out help for other issues I was having with other joints in my body. I had been experiencing hip pain for 5 years that no one could figure out, and the pain was to the point that I couldn’t walk without a limp, my shoulders hurt with even small movements (like writing with a pencil) and it seemed like no matter what I did I was always in pain. With my jaw pain off my mind, it was like my body began to be overly aware of all the other pain in my body. I became my body’s personal researcher and started finding links between ICR and Ehlers-Danlos Syndrome (EDS).
Hypermobility, early onset arthritis, headaches, and subluxations are all common TMJ manifestations in the EDS population. After a year of speculation, I was officially diagnosed with Hypermobile Ehlers-Danlos Syndrome in June 2021 at Vanderbilt Genetics in Nashville, TN. I have hypermobility in all of my large joints and most of the small joints in my body. This explained a lot about why my jaw may have deteriorated the way it did, and I eventually went on to have hip reconstruction, among other surgeries, to improve my symptoms related to EDS complications.
I consider my TJR a success, however I, unfortunately, have not gone without complications. Around 10 months post-op, I began having a bubbling sensation in my right maxillary sinus, and felt a hard lump on my cheek when pressed in. I was able to see my TJR surgeon right away, and he immediately prescribed me antibiotics for a suspected infection.
Right sinus (left of picture) with heavy debris.
Despite this, symptoms persisted to the point of needing a LeFort hardware removal. My surgeon went on to remove one plate on my right side with hopes of resolving the infection. The plate removal, unfortunately, did not resolve it and I subsequently went through multiple rounds of antibiotics before another plate was removed to try and solve the issue. Months passed by and I was still having sinus pain and swelling. At that time, my TJR surgeon and ENT came together to formulate a plan. I was sent back to my ENT for a maxillary endoscopy to have a debridement. This, however, still did not work. I then had a maxillary antrostomy surgery with tissue removal done in December 2021.
They removed a large mass of substance from my sinus during the procedure and it was sent to pathology and came back as a ‘mycetoma’ otherwise known as a ‘fungal ball”. They created another opening to allow for more drainage, and this has improved my situation, however it is still not gone completely. I still have a build-up of substance in my sinus; this is all said to be a complication of the LeFort Osteotomy not healing properly (maybe due to my EDS) and I am still undergoing treatment for this issue as of September 2022. Most recently a culture and sensitivity screening was done and I am awaiting results to see if a specific medication can eradicate this issue once and for all.
Even with these hardships, my quality of life is much better than before my surgery. I credit my TJR surgeon and his team for changing my life for the better and could not be more thankful that I had such an amazing surgeon. If I had to do it all again, I 100% would, without any hesitation. I am able to eat almost anything I want, I do not think about my jaw all the time anymore, and I am back to living a mostly normal life. When I had my TJR I was in my first semester of nursing school and I am now working as a Cardiac ICU RN. I planned my dream wedding and married my best friend and biggest supporter, Brandon, last October. We moved to Florida and have started a new chapter for ourselves.
1 year post-op.
I graduated and now work as a Cardiac ICU RN.
I got married in October 2021.
I would also like to say the support that I have received from the Idiopathic Condylar Resorption Facebook page has been unmeasurable, and I could not have gotten through this without the other ICR warriors out there.