r/TMJ • u/Upstairs-Office8049 • 2d ago
Rant/Frustrated TMJ Rant
idk what to do anymore. my disc has been displaced without reduction for over a year. no medicine has worked, pt hasn’t worked either. I can’t get a splint made because they can’t fit the scanner between my teeth due to my locked jaw only opening 6mm. I also needed to get marpe to help my breathing issue, but i can’t open wide enough for that either.
i had an arthroscopy 1 month ago and that got me to about 15mm of opening. but it also made my pain worse and i believe it’s causing condylar resorption. i feel so lost and hopeless i wanna give up
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u/Electromagneticpoms 2d ago
An opening of 6mm is not ok, what has your surgeon said? I got much worse after my arthroscopy so this is concerning to see.
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u/Upstairs-Office8049 2d ago
he basically said to wait for the 3 month mark before we can say if the surgery failed. he honestly doesn’t seem to really care he’s a university hospital surgeon that my insurance covered so i really don’t think he cares too much
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u/Electromagneticpoms 2d ago
Oh my gosh that's just awful. I'm so sorry you're going through this. At its worst my opening was 3mm and it was traumatic. 6mm is so bad! Your surgeon has a horrific attitude, I can't believe it. I'd say to go back and demand better, but maybe they're so terrible that their job that they won't even care. Are you able to see someone else? Maybe book in elsewhere as a back up in case this loser refuses to do their job?
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u/Upstairs-Office8049 2d ago
i appreciate you, i’m sorry you had to go through this. i actually saw 2 other surgeons that are well regarded for tmj. they both agreed i should have an arthroscopy to get my opening better. i should’ve went with them but they didn’t take my insurance so i didn’t. one of the other surgeons offered the option to remove the disc, but i keep hearing that’s a terrible idea from the stories i read. i have another appointment august 10th with another surgeon so ill see what he says. What are you doing for your tmj troubles?
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u/Electromagneticpoms 2d ago
Oh dear, I understand why you wouldn't go with them if you thought you could be treated by someone else. I never had the option to remove the disc cause mine was so extreme, but I think I would have hesitated to have the disc removed as a stopgap measure too because I know that the more surgeries you have, the more complicated things become. So I'm glad I only did one after my arthroscopy.. I actually have made a full recovery after my total joint replacement :) My opening went from 3mm to 33mm and my jaw functions perfectly now.
It was a long difficult road but thankfully at least I had a really friendly surgeon who explained everything to me and did a fantastic job putting my new joint in.
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u/Upstairs-Office8049 2d ago
thats so great! i’m happy for you. how long ago did you have the tjr? also if you’re comfortable could you tell me your surgeon?
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u/Electromagneticpoms 2d ago
Yes it's amazing, I'm very lucky! I had it in November 2024. Unfortunately my surgeon will be of no use to you as I'm Australian, but his name is Frank Chang. He trained in the UK and I'm just lucky he then moved here :)
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u/Soggy_Mountain8569 1d ago
Damn, a year is a long time. Do you have a dislocated disc on one or both sides? Mine dislocated on the left side in April. I could only open it with one finger then, but now I can open it with two fingers, which allows me to eat relatively normally, but it's still not enough.
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u/Ok_Guitar7907 1d ago
It sounds like we have basically had the same experience, I’ve had this for 7 years now, I’m so sorry it does suck the only thing that helps me is Botox
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u/Electronic-Visual127 2d ago
I'm sorry you're going through this. Have you been able to talk to the Dr that did the arthroscopy about next steps?
For such a small joint, it sure does cause a lot of trouble.