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Hi everyone, I was just wondering - what are your biggest complaints about TMJ disorder? I want to give you a thread to complain all you want (hehe) and let me know what is it that you don't like about your treatment, insurance, whatever!
For me, I wish that there was more research for TMJ disorder patients, so that we could stop saying "we don't know" or "well, there just isn't any research to back that up..."
What are your complaints? Let me have it! stacy PS- and yes, there is a point to this ranting..you'll see.
Insurance.. I hate the fact that most insurers exclude any and all treatments having to do with TMJD. My insurer doesn't do this, but everywhere else I've worked had this exclusion in their policies, and it scares me. I don't like the odd exceptions they make either. Sure, we'll pay for office visits, physical therapy, MRIs and CTs, but no way are we going to pay for your splints. Why pay for most things, but then randomly exclude stuff?
Doctors would be my #2 complaint. There are few doctors that treat TMJD, and fewer yet that seem to know what they're talking about with regards to TMJD. There are specialists for just about any type of medical need in my town, but I have to travel all the way to Boston for help with this. Even then, I've been handed off from one doctor or facility to the next. It's frustrating. I've relived the last ten years over and over so many times now, I feel like making an introductory video for each new doctor that I see.
I think doctors make too many assumptions about the joints and the pain. I went through six months or so of splint therapy, some physical therapy, various medications, exercises and all of that. None of it had any lasting effect, so now I'm looking at surgery, which is exactly what the first doctor I saw said early on. It's painfully frustrating (literally) to go through all that just to end up at what seems like the inevitable conclusion. I'm not mad that we tried less invasive treatments, but I do wish they could determine what might work earlier on so people don't have to suffer for so long running through the standard list of treatments. To me, it seems like several doctors assumed that simpler treatments would work and didn't do much beyond that until their assumptions were disproved.
The whole thing, it just seems like uncharted territory. "Experimental" treatments, controversial surgeries, insurance exclusions, facilities that won't bill insurance directly, long waiting lists for appointments, it's all so frustrating. Even so, I wouldn't care if it didn't hurt so much the whole time!
1. Insurance. After being diagnosed for over a year and spending almost 4K out of pocket, I finally got a tad bit of coverage for physical therapy.
2. Insurance- Having the audacity to call ultrasound and deep massage "experimental".
3. Doctors. They find a drug that helps you and then decide they don't want you to take it forever. they also don't want to refer you on to someone with a different treatment philosophy. So what am I supposed to do, live in agony for the rest of my life?
4. Doctors. They make you keep a pain diary and then tell you there is nothing more they can do. I really just want a vacation from my pain, a vacation from thinking about my pain, a vacation from writing about my pain.....
Not sure if it's where I live or what.. But I find that people do understand it, so I really haven't any complaints on my doctors or anything.. The only thing I would complain about is the fact that it's unchartered territory (to what Alex said)... You have people here and there that specialize in it, it's not wide spread (so there is a trickle affect to Insurance agencies etc).
I must admit, the bay area has a great deal of folks that understand it and successfully try to treat it... I just wish more folks knew about it.
Which means when I do something I like - which usually involves moving my mouth - I end up with a headache. So I have to plan ahead and take something for pain before the pain hits.
The muscle spasms. GRR. Nuff said.
But I love my new NM dentist. I'm in splint therapy and it is helping. But he said "possible orthodontics" and I so don't want that.
Hi- Here are mine: 1. Lack of regulation in the field- there are no criteria for a dentist, oral surgeon, etc. to call themselves a "TMJ specialist", yet they do. 2. Dental profession. This connects to the above. There are no controls on charges for dental procedures or splints from what I can see, discipline comes through a board of their own peers. MD's have alot more restraints on them and what they make than dentists at this point. 3. Feeling like a guinea pig- trying any type of treatment to try and get relief without results and generally paying out of pocket for it. That's enough of a start for me. I think it would take one high powered MD, dentist, or politician's family member to suffer from this to get the ball of research or reimbursement going. Now if they could just do the same with the mammogram machines!- Deb
Thanks Sarah and Deb for your comments. I promise there is a point to this. Please anyone - everyone, respond. We need all the responses we can get! stacy
I think all of the shortcomings within the industry stem from a lack of research_ insurance issues, absence of protocol, the dental/ medical controversy… The industry needs a standard of care.
Research shows that at any given time, over 10,000,000 people in the US are being treated for TMJ disorder. It is hard to imagine that with that many people being treated, they haven’t sat down and written out a protocol for treatment… but we also have to consider that with standards come negotiated payments by the insurance companies.
The fact is, the TMJ is structure made of bone just like the knee, hip, shoulder, ankle… It does differ from other joints in the body, as both the temporal and mandibular bones enclose it, making it susceptible to bilateral injury. We must also consider that the TMJ bears the greatest load in the human body, when considering its size against other load-bearing joints in the body. Swallowing alone exerts 50 lbs. of pressure.
We need research to develop a standard of care! Certainly there are many issues within the industry, but it all starts with research. That said, I think we need a call to action to see this through…
Ditto on all of the above complaints about the insurance industry.
I'm also very disillusioned that the people that should be helping to set the standard of care are the very ones profiting from our pain. As a dentist or doctor making thousands of dollars on splints and other treatments, what's my motivation to get better insurance for my patients and have the insurance then negotiate lower payments with my practice?
Posts: 32 | Location: Des Moines, Iowa | Registered: 02-25-2007
Yes, I agree with you all. I can't stand when doctors and dentists act like it is MY fault that I have TMJ--especially when I am 99.9% positive that I got it from my orthodontic work.
In everyday life these bug me the most:
-not being able to eat subs/burgers -not being able to eat suckers and ice cream cones without pain! -when I'm laughing hard and I suddenly feel my jaw pop and ache. -kissing...need I say more?
Got one more to add. Treatment. No matter what is wrong with your TMJ or the muscles surrounding it, the treatment appears to be the same. I guess your just lucky if you are one of those people that these cookie cutter modalities seem to work for. Then there are the myriad articles that say even without treatment, most people with TMJ problems will get better on their own in 3-6 months. Well, with treatment it's 14 months and thousands of dollars later, and counting....
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