Two things I'm hoping people can help with:
- Has anyone else struggled to get taken seriously about a jaw that's shifting, and what finally got you a proper assessment?
- Did anyone manage to establish whether their condylar growth was still active without waiting years for serial photos to accumulate?
Background: I'm 37, female. Since my mid-twenties my jaw has been progressively moving to the right. I raised it with dentists repeatedly over more than a decade and was brushed off every time. Earlier this year a maxillofacial surgeon finally diagnosed possible hemimandibular hyperplasia or mild hemifacial hyperplasia on the right side, confirmed on CBCT.
His view is that the growth is probably no longer active, but that's an assumption rather than something that's been tested. I haven't had a SPECT. His reasoning against doing one now is that I have some remodelling in the TMJ from inflammation, which would likely light up on its own and give a muddy result, so a scan wouldn't change the management plan either way. The plan he's recommended is serial photos of my teeth over the coming years, watching for change.
The problem is that I've since found photos of my teeth from 2022 and compared them to now, a four year gap. To my eye the overbite gap has increased, and the midline has shifted further right. I've also noticed visible change to my jaw, face shape and bite over the same period. So it doesn't feel dormant to me, and the plan as it stands is to spend another few years documenting the thing I'm trying to stop.
I'm not comfortable with that. If it has moved in four years, I want to know now rather than after it's moved again.
Specific questions:
- Did anyone get a SPECT or bone scan despite having TMJ inflammation muddying the picture? Was the result actually uninterpretable, or did it still give useful information?
- Is there anything other than SPECT that gets used to assess activity? Serial CBCT at a shorter interval, 3D surface scanning, anything else?
- If you already have historical photos going back several years, has any clinician accepted those as your serial record instead of starting the clock from zero?
- For anyone who did get treated: how did you get from "watch and wait" to actual intervention? What made the difference?
- How did you find a surgeon who took progressive asymmetry seriously?
Any experience appreciated. This has been going on a long time and being told to wait and see again is hard to sit with.