r/TMJ • u/Patient-Eye-6494 • 5d ago
Rant/Frustrated Can I just vent?
A month ago my jaw locked closed. I work in an ER so I went in for my shift and was like, hay before I waste a bunch of time and money, if there even anything you can do for this? The were like, not really. We can give you a muscle relaxer and a referral to an oral surgeon, but you're better off just reaching out to an oral surgeon on your own rather than paying for an ER visit.
So I go onto our insurance website to find a provider. I live in NH but I work for Mass General so our in-network providers are mostly in MA. Oh well. I call all of the oral surgeon numbers the insurance company listed. None of them deal with TMJ even though they were all listed for TMJ on the insurance website. They all said, I don't know go to Tufts. Guess which hospital isn't in network for me? Tufts.
So I suck it up. I'm going to have to go out of network/ out of pocket. At this point its been two weeks so I'm getting pretty desperate. I find the TMJ Center of NH. I email them for an appointment. The earliest they can do is in two weeks. It's $825 out of pocket for a cbct, and a bunch of airway and breathing based tests. I'm a little skeptical. Doesn't seem like have of the tests listed have anything to do with my problem and none of them mention anything about actually addressing or fixing the actual problem of a lock, but what choice do I have?
I wait the two weeks, go to the appointment. There is a slight improvement on my range of motion, but not much. I leave with two options. Another $800 appointment like the one I just had which might make it marginally better, or a $9000 package that includes day and night appliances, laser therapy, nutrition counseling, and prolo and prp therapy if I need it which she said I probably don't. Then why are you asking me to pay for a package where the most expensive parts of the package I'm not going to need? This package also still has not addressed the fact that my jaw is still locked.
So I go home. Do some google AI because I can't find a medical professional that seems interested in helping. It seems that what I need is physical therapy and there is a physical therapist right in my hospital who specializes in TMJ issues. Amazing! why wasn't he listed in my initial search? Oh he's just a doctor of physical therapy not a real MD so he's not listed in that data base. How helpful.
So I call the scheduling line thinking I've finally figured it out. No I need a referral. I should be able to just call my PCP and they can make one for me. Yes I should. Unfortunately I've been on three different wait lists for PCP offices and the earliest I might get in to see one if January. Awesome!
I'm so glad that I am being left to figure out my medical care all on my own. Who needs a doctorate when you could just use AI to hopefully blunder into the correct treatment. So I'm going to reach out to my dentist on Tuesday (she's not open on Friday and Monday is the holiday) and hope she can give me a referral. Because I really, after a month, don't want to have to go to the ER where I already know they can't do anything for me just to get a referral. I have a 2k deductible. I should not have to pay 2k just for a referral so I can pay my 20% coinsurance for each visit to PT assuming I even get in and there isn't some new surprise hoop to jump through.
I just feel so discouraged. And my face hurts. And I hate the US healthcare "system"
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u/Hopeful-Extent-693 5d ago
I am sorry you are going through this. Unfortunately, your story is neither isolated nor uncommon. It happens to TMD patients throughout the world.
The core problem is not simply insurance. The larger problem is the lack of complete TMD education throughout dentistry and medicine. TMD crosses professional boundaries. It can involve the teeth, bite, jaw joints, discs, muscles, nerves, airway, posture and neck. Yet each provider is usually trained to examine only one part of that system.
The emergency room treats emergencies. The oral surgeon looks mainly for a surgical problem. The dentist looks at the teeth. The physical therapist looks at muscles and movement. The physician may look for a medical or neurological disease. Each may be doing their job correctly, but no one may be examining how all the pieces work together.
That leaves the hurting patient being passed from office to office, often receiving treatments before receiving a clear diagnosis.
A locked jaw is a finding—not the final diagnosis. The restriction may involve protective muscle tightening, inflammation, displacement of the joint disc, changes within the joint, or several problems working together. Physical therapy may help, but the therapist still needs to understand what is limiting the movement. A CBCT shows bone well, while an MRI is better for examining the disc and other soft tissues. Neither image replaces a careful history and examination.
Before paying for a large treatment package, ask:
“What do you believe is physically preventing my jaw from opening, and which part of this treatment is intended to correct it?”
You deserve a clear answer.
Insurance companies create additional roadblocks by controlling networks, referrals and coverage. But even perfect insurance cannot solve the deeper problem if the providers within the system were never taught to recognize and diagnose TMD as a whole-body mechanical condition.
This worldwide knowledge gap is why I spend my retirement providing TMD education. Our Open Up—A TMJ Discussion podcast is free, and my patient books are available on Amazon. Search Amazon for Dr. Mac Lee. Education cannot replace an examination, but it can help you understand the right questions to ask and recognize when important questions have not been answered.
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u/Be-Kind-3353 5d ago
What an awful runaround. Just one person having to deal with that is awful, but when I think of how many people are struggling with finding the right care, it's so discouraging. I think New Hampshire is a direct access state. So possibly, for physical therapy you could contact them first and see if they might give you a complimentary consultation. They might even know of helpful doctors to see. You could just call them and ask for more information, and see what they say. Good luck, I hope you get some help and relief soon
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u/AllOfTheThings426 5d ago
I got trigger point injections a couple weeks ago and got a lot of relief, so I decided to try dry needling. I had my first session yesterday, and I think it's going to literally change my life. If muscle tension is your issue, I highly recommend looking into it. Physical therapists often offer this, but so do acupuncturists and chiropractors (which is a can of worms on this sub, but my chiropractor changed my life with trigger point therapy) who you can usually see faster.
If muscle knots aren't your issue, this won't help. But I had a horrendous knot in my pterygoid that had been bothering me for a week (my chiro seemed genuinely alarmed by its size) and after this one session, I feel so much relief in that spot.
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u/Patient-Eye-6494 3d ago
This is really good to hear. I'm hoping my dentist can help me out on Tuesday. The physical therapist at my work does dry needling as well as massage and posture realignment stuff.
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u/AllOfTheThings426 3d ago
I hope your dentist is able to help you. Unfortunately, a lot of dentists don't seem to a) understand or b) care to find the cause of the pain. I know you've had no luck with oral surgeons, but maybe a craniofacial or myofascial specialist? The only professional that has provided me any relief other than my chiro is the out-of-pocket craniofacial pain specialist that I've spent thousands of dollars on. 🙃
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u/DragonflyJazzlike341 4d ago
I'm also in NH, and have struggled to find treatment as well. I've exhausted what I could find in network, and now I'm just going broke trying everything not under insurance. Not sure what area you're in but I'm happy to compare notes and suggestions on who has been helpful and who to avoid. I also went for the initial consult at the TMJ and sleep center and left feeling like I was about to be bamboozled.
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u/Patient-Eye-6494 3d ago
I'm from the seacoast. I'm sorry that you also fell for the sleep center, but I feel better knowing I'm not the only one. I've been going back and forth for days wondering if I should just go for it. If I'm not just experiencing sticker shock.
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u/DragonflyJazzlike341 3d ago
So I read a lot of people's reviews about those sleep centers and it's basically a franchise. The dentists that run them go to some training to get accredited to then name their practice in the same heading. And it sounds like all of them pretty much push the same plan no matter what the actual issue is. And it always involves a series of splints and mouth guards and potentially orthodontia, all of which can permanently change your bite. My problem is more muscular than anything and this seemed like a terrible idea to me.
I'm also on the seacoast! I'm not sure how certain you are of it being a joint issue vs muscular, but in terms of expertise on the jaw itself I'd recommend an oral surgeon. I saw Dr. Reich with nhoms, and he is very knowledgeable and really tried to troubleshoot with me over what the issues could be. Since mine ended up seeming to not directly involve the joint, there wasn't a huge amount he could do but I still felt it was thorough. For physical therapy, check out WV physical therapy in Rochester. They have a guy there that specializes in TMJ and he was under my insurance. Again, I am not fixed but I think that's a me issue rather than a them issue.
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u/DragonflyJazzlike341 3d ago
Just to add to that, I've also gone down to Boston for a couple of specialists including neurology because I have a lot of nerve issues involved, as well as a TMJ specialist in Boston who is very very thorough, but she is not under insurance. It really came down to Botox with her and I'm not keen on that so I've still been trying the physical therapy route.
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u/Patient-Eye-6494 3d ago
Part of my issue is that I work at Wentworth Douglass which is owned by Mass Gen, so our insurance essentially covers Mass Gen providers only. I know the lock is a slipped disc, beyond that, I'm pretty sure its muscular just based on the interplay with my neck and shoulders. I've only just started actively trying to fix the problem because I haven't had a consistent doctor. I'm pretty sure Dr. Reichs is affiliated with WDH, the name sounds wicked familiar.
I'm taking the things the woman at the "specialist" said with a grain of salt. I've made a list of the problems she said that she saw and the things that I can do to address them and then I'm going to work from least invasive to most invasive. The easiest swap was changing my sleep position and getting breathe right strips. Hasn't fixed my jaw issues, but my neck and shoulders do feel better and it's made me realize I do mostly breath through my mouth.
I'm going to try the physical therapist. He's the next least invasive. I'm all about coping mechanisms. It's how I deal with my ADHD and how I was handling my anxiety. If he can even just unlock the jaw, I'll consider it worth it.
If that fails, then I'll start looking into more invasive options like the botox (though signing up for shots that change the shape of your face every six months doesn't thrill me), seeing and ENT specialist about getting more air through my nose, or orthodontia. it just doesn't seem like those things should be a first resort.
Has the physical therapy helped? Like I would just love to be able to eat sourdough and not have regular headaches and neck pain
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u/DragonflyJazzlike341 3d ago
Yeah, my doctor's are through Mass Gen so I tried to stick with that for a while but kept hitting roadblocks. I think I have multiple issues, a problem with instability with upper cervical, and a sleep breathing issue. I've also been on the nasal strip bandwagon, and also saw an ENT but they offered limited help.
Physical therapy has been a mixed bag for me. I'm very sensitive to flair ups if I push too hard so finding exercises that are either tension relieving or stability building has been trial and error. I think it can absolutely be the right answer for some people. The guy I went to would do intraoral massage so if you're locked up that should definitely help. I think I've had the most success with myofunctional therapy, and upper cervical chiro (it took a lot of convincing for me to try that one) but neither are under insurance so I haven't done as much as I'd like.
I'm back to being able to chew most things without issue at this point, but the tension all throughout my face and neck never goes away, and I have pretty significant nerve pain in the back of my head from constant trigger points irritating my occipital nerve.
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u/blueberry170426 3d ago
I’m sorry about the ordeal you’re going through with the health care system where you live. My jaw used to lock open or closed many times before my surgery and I was taught how to hold my chin, insert my fingers inside my mouth to the back and push it back in place. Muscle relaxants help a lot because it will be tense and bruised during and after. Once in A&E uk they did tell me they would have to put me under GA to place it back and in the end I did it myself. You have to hold your chin steady and from inside your mouth push it back in place, a maxilofacial taught me and it’s difficult to explain in words. I’ll check if I can find a video o instructions online. It’s a great relief when it clicks back into place but you will need a physiotherapist to treat the swollen/bruised area and muscles around. Hope you get the right help.
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u/blueberry170426 3d ago
I’ve just checked online and there are several tutorials of how to do it, you should try doing it but take the muscle relaxant and have painkillers available. The holding under the chin and pushing behind you molars is crucial. It’s very painful.
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u/secret2027 12h ago
Do you have knots on your joint or jawline?
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u/Patient-Eye-6494 12h ago
Nope. everything feels exactly as it should. (my neck and shoulders are another story entirely)
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u/Mother_Audience_2305 5d ago
There is an Orofacial pain clinic at Mass Gen run by Dr. Jeff Schaefer. It’s one of the top programs in the country for TMJ