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no guarantee treatment will work? I need support/advice.

I really need support; my TMJ struggle has begun to take a severe toll on my life—both personally and professionally. At this point, I would really be open to compassion from fellow sufferers, more than anything, as so many people don’t understand how painful this condition is—and how hopeless it can become when one realizes that treatment is not standard and costs are astronomical and up to the patient only. I am a 29 year old male, living in Charlotte, North Carolina. Here is my story.

Early 2012, I thought I had a pretty severe toothache. Various x-rays from dentists & an endodontist showed no decay or infection. I also had sinus issues—an ENT ruled out any sinus infection or problems. I began to think perhaps I was grinding/clenching my teeth at night due to stress. I was prescribed a night guard and Flexeril by my dentist. Immediately, my symptoms improved; however, I noticed that my bite had changed wearing the night guard (after only one night). Here is the first big mistake. What started as a simple issue became much more complex. I cannot blame the dentist as I agreed to this procedure—but he began to file down some teeth, permanently altering my bite. My bite probably would have returned to its normal position had I stopped wearing the guard—yet I elected to have teeth filed down instead.

In his defense, he didn’t take off much. My bite probably could have adjusted itself over time—yet I was impatient, freaking out that my bite was off, which is incredibly painful. I had a few more adjustments, and then my dentist felt uncomfortable proceeding, which I understood. At this point, my bite was constantly changing throughout the day. My bite would feel one way at 8am, for example, and it would feel completely different an hour later - so forth. I figured my muscles were in constant spasms trying to find a bite where my jaw could rest. And because it couldn’t, my whole system was upset.

I found a dentist who supposedly specialized in TMJ, and things got worse. He had me wear a ‘deprogrammer’ for about a week, and then had me undergo multiple (more!) occlusal equilibrations. He sounded certain that he could fix the bite issues I was having. Unfortunately, after several of those, I still had the same problem. My bite was off—teeth were clashing when I spoke. For months afterwards, I was defeated, drained financially, and just resigned myself to wearing an upper occlusal night guard. For a while that worked ok - I was able to function. I still sought out the help/advice of other dentists, chiropractors, physical therapists, general doctors, and oral surgeons. I was so proactive yet nothing worked.

The night guard stopped working. As of the past few weeks, my symptoms have gotten worse. I’ve stopped wearing the night guard for the time being. However, my bite is off, my right TMJ is popping/cracking (which it wasn’t prior to occlusal adjustments). One symptom I’ve never had were headaches. However, I do have: jaw pain, eustachian tube dysfunction (occasionally), severe neck, shoulder, and upper back pain, and now I believe muscles in my neck are compressing nerves as my right arm/hand frequently starts tingling. I feel mutilated. And the insurance dilemma outrages me. So many people are suffering from severe pain yet insurance keeps passing the buck, leaving people suffering. My health insurance will cover TMJ surgery only—yet none of the other treatments, such as splint therapy.

Here are the current medications that I take: Vicodin for breakthrough pain (which it doesn’t even help most of the time). Amitriptyline (don’t’ really notice a difference), either diazepam or flexeril at night to reduce night time clenching (doesn’t work completely, and I can’t take muscle relaxers during the day at work for obvious reasons), Cymbalta (not noticing a difference, but it’s only been a few weeks), and now my doctor put me on gabapentin (300mg at night to start—again, no difference, but it’s only been a week). Yet despite all these medications, I am still in so much pain and discomfort.

My next step… while I’m in a lot of debt, I was considering seeing one more specialist, who received his training at the Dawson Academy. I’m a bit turned off by the two neuromuscular dentists in my area, as their websites seem to focus more on selling cosmetic dentistry, and a $5000 splint for phase I alone sounds outrageous—again, none covered by insurance. The TMJ specialist I’m seeing next week specializes more in returning the condyles into their needed position for phase I. I’m assuming phase 2 would consist of changing my bite permanently (through equilibration or other means). My teeth are very straight so I’m not sure orthodontics would work. I know that I need my bite stabilized and fixed to reduce this constant state of spasming, but I’m so confused. I can’t afford 50K in dental restorations. I know there are disagreements with the dawson academy approach (Centric Relation) vs the LVI (neuromuscular approach). All I know is that I’m in pain. And seriously depressed. Who should be expected to pay such an amount of money with no guarantee that treatment will work? I've tried all conservative therapies up until this point.

I’m so sorry this is so long; if anyone has read it in full, I really appreciate it. Have any of you gone through a similar situation, and/or can offer input/advice?

Regards,
Gary
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replied June 22nd, 2014
sorry can u explain what "bite being off" means?

because i having kind of the same problems as you, I never had dental treatment done in my life since childhood, i never had braces and on my TMJ was actually caused by my baby tooth removal which i needed to chew and balance my occlusion, i am suffering from TMJ since the age of 13 and today im 16 and and yes it has gotten worse, for 3 years i had no pain, just clicking, but in march my bite started moving up and up and my teeth are closer than before, which i find disturbing and the ONLY thing i wanna fix, i am losing space in my mouth, is that the same thing u have?
yes, bite problem is by far the worse, do feel kinda same as u lost space in ur mouth and its getting worse and worse everyday?
i dont even have enough money to fix it, i am thinking that repo. splint might help, i havent heared of any surgery that simply gets ur bite back and makes ur jaw longer, because i just know how perfect my jaw/teeth were be4 i turned 13, i simply had no TMJ, no clicking, no pain, and i was able to bite anything i wanted, and if i wont get my old life back, i think im gonna die.
pece.
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replied August 16th, 2014
Monkeyfriend- a bad bite or a bite being off means that your teeth no longer match up correctly or touch eachother anymore. It could mean your discs are displaced, which could throw it off or that your jaw and facial muscles are tightening in weird ways which could also throw off your alignment. Also, I know what you mean about the interior of your mouth feeling smaller. Mine does too, increasingly so each day. How haveyou been since you posted?
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replied June 25th, 2014
I totally feel for you. I wish I had something to offer, but I don't. I have a great prostodontist that fitted me for a bite guard, but warned me it may not work and may make things worse. It helped at times, but in the end I think it has caused more harm. He also warned me not to ever have any permanent alteration to my bite etc. I did have anthrosentesis (sp) which helped one side for a while, but made the other side worse. I am lucky that I have excellent insurance and so far everything has been covered. That said I see a specialist at UCSF a week from today and hope he has some ideas. I also suffer from plugged ears, ringing in the ears, vertigo and headaches. My neck and back were bad to start so it is hard to differentiate the pain. I would suggest finding a good Maxifalliologist (sp again) and get another opinion on how to progress from here. Have you had a cone scan? Do you know what kind of shape your joints and disc are in?
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replied August 16th, 2014
Annie- our symptoms sound remarkably similar. How long have you been suffering from this? Are your discs displaced? Mine are but my opening is so limited, finding treatment options at all has been hard. Like you though, I think my splint has onlyworsened things. One of my joints seems to have slipped reallyfar back as a result leading to allsorts of delightful tinnitus issues. Are you still wearing your splint? Id be really curious to see what your specialist recommends. I was contemplating a dual artheroscentesis but wasnt sure if it would be successful. Your results have me rethinking it again.
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replied August 16th, 2014
Dang. I had typed up this really long reply and then my computer did something funny and it all disappeared. Gurrr. So lets try this again. Its beyond horrible that we're all going through this. Tmj problems would be one of the ultimate things to wish on an enemy if you didn't want them to die but just really suffer. Nobody really understands what this is like andthere are so many mild cases out there that normal people really just don't get what a huge burden a moderate tosevere case can be. Horrible! Beyond horrible. Welook normal from the outside, so its just really difficultfor people to understand. My ownfather asked me once if I just needed attention or something. So, I wished tmj problems on him. Ha! No,not really. That would be awful. But we all truly understand where you're coming from Gary. Thisis a terrifying problem and the costs are astrononomical. Insurance is a horrible problem when trying to get to tmj coverage. I really am sorry you're suffering with this. I have all of the same symptoms you do, including tinnitus, disc displacement, and dysphagia all caused from my tmj problems, and I'm on just about all of the same meds you are. Only difference is, ive never had equilibrium shaving done to my teeth. Id beware any doctor who recommends such a treatment in the future. Are your discs displaced? Ifyou don't know, id recommend a cone scan or mri to findout Bc that maychange what you do from here. While trying to figure out yournext step, see if there's a tmj support group in your area. It mighthelp to be around people who have and are experiencing what you're going through, and they might be able to offer invaluable advice. Message me anytime if you need support or to vent. Going thru this alone is terrifying which might lead to bad treatment, knee jerk reaction choices. I know Ive made a few. Good luck. We all sympathize, believe me.
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