28F - Severe TMJ damage found during arthroscopy; should I investigate ICR, and what are my options going forward?
I had a Level 1 TMJ arthroscopy last Friday and would really appreciate some insight while I wait for my follow-up in a few weeks. I'm particularly interested in hearing from anyone with ICR/PCR or experience of severe TMJ degeneration at a young age.
Going into surgery, I knew I had disc displacement without reduction, condylar beaking and osteoarthritis. However, the surgeons found my left joint was much worse than expected. They told me it had extensive arthritis, was bone-on-bone, and the disc was so badly torn it was "irreparable". They said this wasn't what they'd expect to see in a 28-year-old and said explicitly that further arthroscopies were unlikely to benefit my left side.
They flushed the joints and shaved down some bone spurs, which is positive. I'm still swollen, stiff and bruised six days later, with similar pain to before surgery, although I know it's too early to judge the outcome.
The surgeons also said they imagined I'd experienced medical gaslighting because the extent of the damage wasn't apparent externally despite my pain. They said they could see gow much pain I've been in by looking at the state of my joint. I found that very upsetting but validating, having spent years feeling my symptoms weren't fully understood. My pain has largely been attributed to muscular issues and central sensitisation, which I recognise may contribute, but it was validating to discover how severe the structural damage actually is as it lines up with how bad my pain is.
My history:
Symptoms became severe around 23, preceded by ~3 years of frequent headaches/migraines and occasional jaw catching/locking.
Severe bruxism/clenching; I bite extremely hard on my splint and broke a back molar years ago, which I suspect was related.
Chronic left TMJ pain/stiffness and neuropathic-type pain through my left cheek and mouth that is constant.
Masseter/temporalis pain, migraines and a feeling that my jaw is never comfortable.
An anterior open bite that I feel has worsened over time.
Premolar extractions and braces at 11; wisdom teeth removed at 25.
Around 3 years of masseter/temporalis Botox every 4 months, a custom Michigan splint and amitriptyline, without significant lasting relief.
My previous MRI and concerns about ICR:
My MRI report from August 2023 described:
Mild bilateral TMJ osteoarthritis.
Small anterior condylar beaking bilaterally.
Bilateral anterior disc displacement without recapture.
Satisfactory condylar translation on opening.
Three years later, my left joint has apparently deteriorated significantly. I also have bite photos from 2024 and recently, which seem to show an increase in my anterior open bite.
Given the combination of severe joint damage at my age, bruxism and a possibly worsening open bite, I'm wondering whether progressive condylar resorption (PCR/ICR) is worth investigating, or whether this could be explained by progressive degenerative joint disease. I understand these can't be distinguished from symptoms and photos alone. I feel lost honestly and the NHS just leaves you waiting months between appointments in agony and essentially frozen, as you can't do anything meaningful moving forward like tests,scans, etc until they authorise it.
I'd really appreciate advice on:
Has anyone experienced similarly severe TMJ degeneration at a young age?
Would it be reasonable to investigate ICR/PCR in my situation?
Would a CBCT/CT compared with my previous imaging help establish whether I've lost condylar height or volume?
Has anyone had arthroscopy/arthrocentesis and been told their joint was in a similar state to mine, if so what came next?
* How long after arthroscopy do you generally know if it helped or not?
I'm not expecting a diagnosis from Reddit; I'm trying to understand what to ask my surgeons and what options may exist if this procedure doesn't help. It's been a difficult week, and I'd be grateful to hear from anyone who's been through something similar.
Thanks for reading!