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gary827 12-09-2013 02:37 PM

I really need support/advice. Please.
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?


Canuck65 12-10-2013 08:23 AM

Re: I really need support/advice. Please.

First, don't blame yourself - you tried making the best decisions at the time. That's all we can all do and TMJ is a very difficult and poorly understood condition and unfortunately there are a lot of doctors/dentists who say they can treat TMJ but don't have a clue.

With respect to your night gaurd changing your bite - it probably wasn't fitting properly and needed to be adjusted. I had mine adjusted several times over a 3 to 4 month period before it really fit. And even now whenever I see my dentist I bring it in and she sees hows it fitting and asks me if I feel ok wearing it.

With respect to filing down teeth - I urge no one to ever do this. I had coworker who had mild TMJ symptons went to a dentist who said her bite was off and could fix things by filing down her teeth - which she did and now is in worse shape then before and now doesn't know what to do.

I have severe neck pain and shoulder pain too. It doesn't radiate down my arm though - but that's a sign a nerve is being pinched. Have you tried trigger point injections? A doctor injects a needle with an ansethetic which freezes the muscle for a few hours which causes it to relax. I found this helped tremendously but was going about every 1 to 2 weeks and so I am now looking at botox (Though I've received mixed opinions on the use of botox for this purpose). If you haven't tried it you should look into it - but you need to find a doctor who knows what they are doing - there are a lot of nerves in the neck.

I was on Gabepentin and it didn't do anything for me but that being said I have subsequently learned that you need to be on fairly high doese so if 300 mg doesn't work ask about increasing the dosage. I was also on Amitrypatline which didn't do anything for me other than space me out.

I know surgery should be considered as a last resort but is this something you've looked into seriously? If the opinion is that this will help your TMJ then maybe its worth it if your insurance will pay for it. If what really is going on is the fact that your teeth are misaligned because they were filed off i guess i don't understand how wearing splints will help or returning your condoyles into a more normal position (or surgery for that matter) will help It seems to me then you have to rebuild those teeth somehow. Anyways, just my thoughts.

I think you need to get a second opinion from someone who doesn't have a vested interest in selling you a treatment plan.

I can recommend Dr. David Alexander Keith - He is a very respected oral surgeon at Boston Mass General Hospital. I know its a long trip for you but I think he'll give you an honest opinion. And I would recommend that before starting any further treatment. I've seen him twice ( and I'm in Toronto Canada) I wanted a second opinion about jaw surgery as I've been told I have to have total joint replacement by my oral surgeon here . Also Tufts University in Boston is supposed to have a very good TMJ Clinic. There is also supposed to be avery good oral surgoen in Baltimore - Dr. Warburton (but this is justt based on comments on threads on this subforum).

I sympathize with the pain and suffering. I've been suffering from 2010 and it just sucks all the life out of me. I can't chew anything - I live on mush. I can open my mouth the width of 1 finger. It can hurt to talk. I try to live with it. But I stopped working last summer and now am on LTD. I have lousy dental insurance and modest benefits for physio and massage therapy (but I am grateful for what I have). Fortunately my drug plan is pretty good. The only thing is that the provincial public health plan covers a lot of the other medical costs including my TMJ surgery if I go ahead with it. I know financial stress doesn't help. The Canadian health system isn't perfect but I honestly don't know how Americans cope.

Anyways, I hope I' ve provide some helpful comments. Take care and hang in. Let me know what you decide to do.


megbro2010 12-10-2013 01:20 PM

Re: I really need support/advice. Please.

I am right there with you I am 25 and have been suffering with tmj problems for about 12 years. It does take people awhile to find the right treatment for them. I have come to find every case is different for tmj. I advise you even though it may be costly until you feel comfortable with your doctor you may need to keep going to consults. I scheduled one about every other month so I could save enough to go to them. In total I have had five consults before finding the right doctor. But in the end I believe it will be worth it. Be willing to consider all types of dentists. I have seen orthodontists, dentist (specializing in tmj), oral surgeons, and was recommended to a prothodontist (this will be my last ditch effort if my current treatment plan doesn't work). You may want to call around to see if a certain dentist would recommend someone in particular for TMJ.

I have had orthodontic work done since I was 5 and I always believed that was my problem. Thanks to my dentist caring I have found a team of doctors that have my best interest in mind and are giving me suggestions to start feeling better.

I have had arthocentis done on my joints 3 times (I go every three years for this)and I will be undergoing my next botox injections next Friday to help with the spasms. I am not sure if you would be willing to consider this but the first week is rough for me but after that I did feel relief. I have also had growing up orthodontic treatment that consisted of retainers, braces, jasper jumpers, and herbst device. Pretty much everything but the kitchen sink was thrown in my mouth. Oh and she also did grind down my teeth probably at each appointment I went too.

By doing various CT scans I have now been diagnosed with Degenerative Joint Disease. I was told by the person that gave me the diagnosis he reccomended someone in Baton Rouge for Treatment. However, I had a consult with him and I just did not feel comfortable with him. It seemed he was giving me a lecture and telling me I am doing everything wrong. While even him a specialist with TMJ splints and really does not understand what pain a person is going through. I then took another reccomendation that my dentist and her assistant gave me in seeing a team of orthodontist. They seem to be my savor and are making since in a treatment plan.

The first thing he told me today after studying my case for three weeks was that I should have NEVER been placed in the herbst device. He still uses it but says the ONLY patients he uses it for is a male with a severe overbite. This is mainly because this device actually takes your jaw and moves it out of socket. He says that their office the majority of tmj patients they treat is female. They could literally count on their hands how many males have visited.

I am starting a new splint therapy today and this will last of a goal of 4-8 months of receiving adjustments weekly for the first two weeks than I will be on a 3 wk call back to receive adjustments. And let me tell you they are working down to the inch with each adjustment because they usually only do bottom splints. However, for my case they are thinking a top splint will be best. It is not the best looking and I do not sound great when talking. However, right now I am sore from the appointment this morning and I am hoping it will be a good sore soon. After splint therapy and my jaw is stable he said because of my situation I will receive a large open bite. They will then place me in braces but because of my case they will look at doing surgery to correct my bite. He says it will only be the top middle portion of my jaw. Which will then give me a nice pretty bite. :)

I am now hopeful that I can possibly get some relief. I was also recommended to a physical therapist and I will be calling in January to see about doing a consult with them in possible treatment. Just two months ago I was pretty much depressed knowing that all I could do was be on pain medication, muscle relaxers, and receive the arthocentis to stay comfortable. However, when I did the consult with the orthodontist I was given hope back in finding treatment.

Just know it is possible in finding a happy medium and it may take time. I am living at a 8-10 daily on a pain scale and I will rework my lifestyle again to fit with the new doctors treatment plan.

gary827 12-10-2013 02:27 PM

Re: I really need support/advice. Please.
Thank you to everyone who has taken the time to read my case and offer support; I truly appreciate it.

As a young person living with this pain, it's become quite depressing. I miss those early 20s days where I was carefree--funny how you don't really think about those types of things until you're dealing with something like this.

What's more of an anomaly is that I'm a male with symptoms, but like Meg, I believe a lot of the orthodontic work I received in the teens could have contributed--I just remained without pain until my late 20s. I had a certain appliance when I was a teen on the roof of my mouth designed to widen my jaw. I ultimately ended up with an edge to edge bite, which probably also complicates treatment options even further.

I'm not quite sure where to go next--I'm definitely a conquering type. I don't like to resign to the idea that I will be taking medications to cope for the rest of my life. Even as it is, on the medications, the symptoms are only dulled about 20% yet I'm over-medicated. Unfortunately everything you read online is confusing about TMJ; had I broken a knee or an arm, treatment is clear. Things involving TMJ are much more complicated when nerves, muscles, ligaments, and even teeth are involved. Not all treatments are the same; what's more unfortunate is that the patient is left trying all different treatments that insurance won't cover. I am already in some serious debt (though manageable); I can't really afford a bunch of orthodontics and/or crowns.

I am seeing another specialist next week. He's another dentist who "specializes" in TMJ. He's trained by the Dawson Academy. We'll see what he recommends, and I'll keep you all updated.

I feel like I need to stay away from LVI Neuromuscular Dentistry. $5,000 for an orthoic seems pretty drastic and most practices that I see promoting this heavily promote cosmetic dentistry as their specialty.

Also there is the thought of surgery. It's daunting and not something I want to deal with; however, there is a pretty good oral surgeon here named William Kirk. I'll consider a consultation with him if things get bad enough. I want to see how this appointment goes next week. As for medications, I just started the gabapentin 300mg... will give it another week before speaking with my doctor about increasing the dosage.

These are the years of my life I should be young/carefree. Not battling something that ultimately seems like a chronic condition I'll always be suffering with. But.. things could always be worse. There are people out there who have it far worse than I do.

I wish you all well and thank you for the support; please keep me updated on your journey/progress. I also welcome others' opinions/advice.

It means a lot to see someone who understands.


gary827 12-10-2013 02:31 PM

Re: I really need support/advice. Please.
I should also mention that I do have full range of motion, at least. I can fit 3-4 fingers in my mouth. I haven't suffered with any locked jaw symptoms, but I have experienced all of the other debilitating pain; jaw pain, ear pain/congestion, neck/shoulder/arm/back pain, nerve symptoms, etc.

I say that with caution, as I'm certainly aware things could progress to a state where I don't have full motion. *sighs* Good luck everyone. :)


megbro2010 12-10-2013 03:26 PM

Re: I really need support/advice. Please.
You would be suprised I had a feeling in my gut that orthodontic work that I received caused my trouble. And to find out today that it is a slight possibility I was sort of happy. I even told the orthodontist my dad had to have his jaw reset and he looked at me and said well it is genetic. I don't know everything behind my dad's decision to get it done except that he hated being on a liquid diet. So there could still be a chance that orthodontic work may have messed something up.

I feel exactly like you I want to be off all the medication I am on and I am hoping that there may be an end to this pain soon. I have honestly told people no matter what surgery if 80% of my life could be gained back I would do it.

It may sound crazy but I have been doing this after all the consultations you may want to get a notebook and start writing everything down. You could even write in it during the week. Just when something comes to your head its best to have it down so when you go to doctors you can bring it up. You could write down like the doctors you considered, what goes on during consultation, mediciations your on that work and don't work, and options you may be given by the doctors. Doing this helped me choose who I wanted to go with for treatment. Also there was a survey I had to do for a doctor I kept a copy and showed it to the orthodontist which was great because it saved me from talking so much. (He already hated it because I was in tears during the consult and he hates to see especially the patients in pain and crying.)

The best thing to do is just document what you can because when you do feel that you have found the right doctor and treatment they will know what to do for you.

I honestly wish I had full range of motion. I can still slide my jaw left, right, and forward even though it is difficult and I am in some pain. However, I can open my mouth about 1 finger on a daily basis. If I am lucky it may get to be 1 1/2. Honestly, I took the oral surgeons advice because I have been on ibuprofean 600-800 mg he recommended that I go to mobic. When I made that switch I have regretted it ever since. Before when I opened it hurt but I could open at least 3 fingers and my jaw would pop or click. However, I now rate it to a scratching chalkboard when I attempt to open my mouth. I only took the mobic for a week than called his office and really nothing has changed except I got a 1/2 of a finger added much I am in tears when I attempt to open. If I am not to happy (from anstheia) I will mention it to him next friday when I see him. I really don't want to do another arthocentises this soon but we will see.

Keep us posted on how everything goes and Good Luck with finding the right doctor.

Canuck65 12-10-2013 04:46 PM

Re: I really need support/advice. Please.
Keep us updated. Its a slow path but Im sure you will get there. Another drug to consider for pain relief- is antiflammatories like Celebrex. Inflammation can also cause pain, so if you haven't tried it - you might want to discuss this with your doctor - Gabepentin from what i understand works on nerve pain so its slightly different.

I don't know what scans you've had but you should consider asking about the following scans which are typically used to diagnos TMJ problems if you haven't had them done:

- panoramic xray (basically 360 degree exray of your skull and jaw)
- MRI (primarily used for looking at soft tissues, particularly the disc in the TMJ joint)
- Cone CT Scan - done at the dentist office or at dental radiologist - which images bone and can pick up skeletal deformaties of the jaw and joint;
- Hospital Grade CT Scan - which is the same as a cone CT scan but the images are finer and done at a hospital (at least here in Canada).

Hopefully your insurance will pay or at least cover some of the cost for these scans if your dentist/doctor orders it.

I would also see a neurologist about the nerve pain radiating down your arm. That is probably something that a dentist (even a specialist in TMJ) isn't going to be comfortable treating and may need treatment independent of your jaw problems (even if it is related to your jaw).

Again, take care, hang in and let us know how it goes.

gary827 12-10-2013 06:09 PM

Re: I really need support/advice. Please.
Meg - wow, I'm so sorry to hear that! I feel guilty for going on and on about my symptoms when I can't even imagine the physical and emotional pain you've endured over the years! It sounds so very strange coming from a complete stranger such as me, but I suppose sometimes talking with a complete stranger can be very therapeutic, especially if there's a common issue that facilitates sympathy. The idea about the journal sounds great; I should start one of those. With the countless amount of doctors I've seen, I feel so frustrated feeling like I have to 'start from scratch' explaining my symptoms to a new doctor for the first time. My primary doctor has been great and very empathetic; however, of course, he's limited in what he can treat. I can already sense he's feeling out of his comfort zone, and my next step (should I require stronger medications for pain), will be needing to seek out a pain specialist. I tried my luck with one of those earlier last year, and I didn't care for the place I was referred to @ all. Several different visits, I never saw the same doctor once; and I was charged as an outpatient just for a doctor to see me for 5 minutes and prescribe medication! My out of pocket fee for each visit was 200 each! I've already done my research and found a pain specialist doctor I'd like to be referred to next, should I have to do that. The sad thing is... I'm 29 now, I have a full time job in Finance, and I've been on the climb up for several years now. Having to resign to taking narcotics for the rest of my life makes me feel so defeated and definitely threatens my job performance--though I've already begun noticing a decline in my productivity.

Canuc: Thank you for your response. It's become very frustrating for me because while I know that I have at least one disc displaced (w/ reduction) based off my own research, I can never seem to get a doctor to do an MRI on me. Reasoning seems to be that it costs more than medicinal treatment and none seem to take me seriously since I can still at least open my mouth pretty wide. I may need to become more aggressive and insist it. I know that, by law, the state of North Carolina mandates diagnostic x-rays & TMJ surgery (should I need it) to be covered by employer health plans. Anything else and I'm on my own. I've already taken out a loan with my bank to pay off credit card debt racked up for this very reason so future treatment options will need to be given serious consideration before I put money down. I know that I need to have my bite fixed (since it was ruined with an occlusal equilibration, throwing my muscles into permanent spasms), but maybe a more justified approach is to wear a night guard for the rest of my life and hope that it doesn't progress to surgery. I don't know honestly. What I do know is that I truly appreciate you taking the time out of your day to respond to a complete stranger. I don't know why it's taken me so long to come here, but I was feeling pretty low this week and needed someone to listen who truly understands. I have really close friends and they're great and all, but I can only talk their ears off so much .. and to be honest, they don't really know what it feels like either. They see me, and on the outside I look completely normal. It's very easy for people to think it's all in my head (even though my friends would never say that to my face). I have been taking OTC anti-inflammatory meds, but maybe I should revist the prescription strength approach. It never worked previously, but perhaps I should try it again. Seeing a neurologist is also a good suggestion; it's the only specialist I haven't seen yet for this condition. There's a muscle on my right shoulder that's in a pretty bad spasm, and I definitely think it's pinching a nerve in that arm. In addition to the gabapentin, I've tried changing how I sleep. I love sleeping on my stomach, and I read that that's the worst sleeping position for one's jaw/neck. Will see how that goes also.

Best of luck to you both! Keep me updated on your journey!

helpfinally 12-10-2013 07:52 PM

Re: I really need support/advice. Please.
OMG, Gary! EVERYTHING you wrote in your first post and subsequent posts is how I felt for a good 4 1/2 years! I am so sorry and hope you find the answer soon! Mine started when I was about 50 and I can't imagine younger people going through this because I would walk around for years totally questioning why everyone I saw seemed "normal" and not in pain and yet I couldn't function and how everything seemed to have a cure and this didn't! Very frustrating and to add the cost while I have three...yes THREE...very good health plans and it didn't mean diddly squat!!!!! Hang in there! The therapy on my shoulders and upper back, along with this current splint has made me functional. I hope and pray this continues to last.

gary827 12-10-2013 08:41 PM

Re: I really need support/advice. Please.

Are you wearing a 24/7 splint or just during sleep? Do you mind me asking what kind of splint and what its purpose is?

Thanks. :)

megbro2010 12-11-2013 07:22 AM

Re: I really need support/advice. Please.
[QUOTE=gary827;5249588]Meg - wow, I'm so sorry to hear that! I feel guilty for going on and on about my symptoms when I can't even imagine the physical and emotional pain you've endured over the years! It sounds so very strange coming from a complete stranger such as me, but I suppose sometimes talking with a complete stranger can be very therapeutic, especially if there's a common issue that facilitates sympathy. The idea about the journal sounds great; I should start one of those. With the countless amount of doctors I've seen, I feel so frustrated feeling like I have to 'start from scratch' explaining my symptoms to a new doctor for the first time. My primary doctor has been great and very empathetic; however, of course, he's limited in what he can treat. I can already sense he's feeling out of his comfort zone, and my next step (should I require stronger medications for pain), will be needing to seek out a pain specialist. I tried my luck with one of those earlier last year, and I didn't care for the place I was referred to @ all. Several different visits, I never saw the same doctor once; and I was charged as an outpatient just for a doctor to see me for 5 minutes and prescribe medication! My out of pocket fee for each visit was 200 each! I've already done my research and found a pain specialist doctor I'd like to be referred to next, should I have to do that. The sad thing is... I'm 29 now, I have a full time job in Finance, and I've been on the climb up for several years now. Having to resign to taking narcotics for the rest of my life makes me feel so defeated and definitely threatens my job performance--though I've already begun noticing a decline in my productivity.

Oh don't feel bad. I have come to learn that everything I am going through has a reason. I was talking to my friend that is a nurse and she said that some people have a strange reaction to medication sometimes. I guess that is one medication that just doesn't agree with my body. I am just thankful that I have finally found the right doctors to help me. But you are right being able to talk here to other people suffering like me is amazing. Mainly because I am having to do the consults and appointments by myself. All the information that I am gathering can be so much. So that is why I began writing everything down that I was going through. It helped greatly and when I finally found the right doctor they knew what to do with the information.

Personally I have no support from my parents because every time that I tell them something they think so crazy and that I am doing the wrong thing and receiving too much treatment at once. So I am taking all of this on my own until my bite starts to change I may not tell them anything. And I will only tell them then because it will be visible. But of course when it is time for surgery I will let them know so they can be there.

I know you visited the pain specialist but have you considered acupuncture, massage therapy, or physical therapy? Those may be other options that you can look into. I can tell you in January I will look at starting physical therapy and I have had massage therapy in the past. After moving to Baton Rouge I had to give it up because the cost here was to outragous. I just had acupuncture earlier this year and for me I was given relief enough to handle two weeks. (Oh shockingly my insurance also covered this and all I had to pay was the copay). Something happened though at my last appointment where she did not hit the right trigger points. I was still in pain so that was when I made the decision to find an oral surgeon to help me.

Oh and when you find the right doctor you will be shocked. I got my splint in around eleven yesterday and I was immediatly sore. I attempted half of the obedience class with my dog before leaving. Then I headed home and got ready for bed. While I was in the shower I had missed two calls. I was shocked when I heard the voicemail. It was actually the orthodontist calling to check on me seeing if I was feeling ok and if there were any problems. I did return his call because I did have one question and he was able to answer it. He did remind me we are having to reverse what the herbst device did. My jaw was taken out of socket and now we are having to slowly move it back in. He then told me if I have ANY problems call him on his cell phone immediatley. Really even if surgey is in my future I am happy that I have these doctors behind me in treatment.

Oh suprisingly we have another thing in common. I work as an accountant for the Department of Corrections here in LA. I really enjoyed finance in college. However, I always wanted to work as an accountant when growing up. Thanks to my grandmother I always loved playing with money and now I get to work with it on a daily basis. Hope you can find some answers soon for some relief. Please keep us posted and know when you need to vent and talk the board is here for you.

helpfinally 12-11-2013 06:01 PM

Re: I really need support/advice. Please.

Are you wearing a 24/7 splint or just during sleep? Do you mind me asking what kind of splint and what its purpose is?

Thanks. :)[/QUOTE]

Well...let's see. The first five splints I had I only wore at night. I didn't feel too terribly bad when I woke up, but it got bad as the day went on without the splint. At first, I thought the splint was making it worse and now I realize it's because I took the splint out that it got worse. Splint number six, seven and eight I wore full time but only for a couple days at a time because I had some sort of reaction to all three (mouth full of ulcers within 48 hours of wearing it) and I gave up and went to a different doctor. My current doctor gave me an occlusal (sp?) splint that I wore 24/7 for about 4 months until my bite finally stabilized and I was pain free for a few weeks. I saw him once a week for the 12 weeks and he made "adjustments" to the splint by taking some sort of dental tool and down to the tiniest detail adjusted the indentions where my teeth made contact to the splint. As the bite stabilized, fewer adjustments to the indentions were needed. Then he took impressions of my top and lower bite and put them on some sort of machine and documented every little indention that had to made to my teeth (mostly my crowns) that made my bite perfectly even so no one side made contact before the other. Unlike all the other doctors who said the back teeth should not touch with this disorder, he stated the back teeth touching equally is the most important as those are the ones that work the joint. I now wear the splint only at night. I'm not perfect now but I'm usually pain free and I now enjoy salad again! Hope all that makes sense...I'm sure there are much more technical terms than the those I used. lol

On the importance of the splint being 24/ prothodontist compared stabilizing the bite as similar to wearing a cast on your wrist when it's injured and needs to be stabilized. That made sense to me.

Of course, not all treatment works the same for all people. I saw more doctors than I can keep count and ruled out everything from lyme disease to cancer before I finally found something that worked for me. Fingers crossed it continues to work!

Jkirv80 12-28-2013 05:00 PM

Re: I really need support/advice. Please.
Wow, just read thru this whole post. I recently found out about healthboards when I was searching out symptoms and treatment for tmj. Like you, I have been really depressed. I have lost hope & feel defeated.

When I was 16, after I got my braces off, my jaw on the left side started clicking. I ignored it and thought it would go away. Well it didn't. By my mid twenties i sought out a specialist after I found out from my dentist that it could be tmj. I was given splint therapy. A top splint to be worn at night and a bottom one to be worn 24/7. It seemed to help. Over time, my bite stabilized but my appliances wore out. I thought I would be ok without them since i had gotten better. Me & my husband split during that time so i could not afford to get new appliances.

Over the next 2 yrs my symptoms came back but with a vengeance, way worse than before. Last winter, my jaw got locked in an open position. Completely freaked me out. I knew I had no choice but to go back to my old specialist regardless of having money or not. Luckily when I was asleep, my jaw slipped back into position. The specialist ordered me a new pair of splints. I had to put it all on a credit card. During treatment, I got worse this time around instead of better. My jaw once again got locked into an open position. I was in constant pain & dealing with a lot of anxiety. I went back to my specialist and started bawling in his office when he told me to not worry about my bite even though I told him I thought my jaw my dislocated. He told me to just keep wearing my appliance and to trust him.

My chiropractor convinced me to get a 2nd opinion. He gave me the name of another tmj specialist in town I had never heard of. So I started going to her. The X-ray she did showed my jaw was indeed dislocated. She told me to stop wearing my old appliance and that she was going to treat me differently. She did a thorough exam and a sonogram on my joints. She said she thought she could help me. That night, my jaw slipped back into place after being dislocated for 6 weeks. I was beyond happy and excited and thought i had made the right choice by going to her.

Well it's been 5 months now. My condition has not gotten better, in fact I am worse. My range of motion now in my jaw is only 1 and half fingers, used to be 3-4. The deviation is worse. I have now been losing my sense of smell and taste on top of it. I can not even wear my splint because it causes me too much pain even though she makes frequent adjustments to it. I also have a weird sensation when I swallow now as well, like theres a lump or something there, i can hear it every time i swallow unless i tilt my head a certain way. She is now wanting to do laser therapy on me for inflammation. She told me it was ok to leave my splint out for awhile if I thought it was causing me too many issues.

I had to request an mri which showed that my discs on both sides were shot. Flat and dry. The XRAY i originally got as well showed the beginning stages of arthritis. I don't know what to do anymore. There aren't anymore docs in my area that i am aware of and I am swimming in debt due to the last 2 specialists.

No one i know can comprehend or understand what i am going thru. It has definitely taken down my quality of life. My jaw gets tired now if I talk much, i can't eat certain foods anymore either.

I am glad i found this website though so i know i am not alone. It definitely helps to talk to others that can relate. Hopefully i will be able to educate myself more and possibly find a good doctor here in illinois over time due to other members advice.

Life you, I am fairly young, 33. I have a long life ahead of me. I can't bare the thought of living like this for the next several yrs. Right now i am not on any scripts for it. My doc tried putting me on an anti-depressant for the pain but i decided to try and go a more natural route for inflammation and pain instead. The thought of being on a bunch of drugs scares me.

I hope you are doing ok and look forward to hearing about you and others journeys.

Jkirv80 12-30-2013 03:51 PM

Re: I really need support/advice. Please.
Been going to a Chiro for yrs, get my neck, shoulders, hips back and most recently my jaw done, not helping me, glad it's helped you though.

irogue 01-08-2014 02:01 PM

Re: I really need support/advice. Please.
<Some things that helped me> -

- Got a bite splint.
- Ate Muscle relaxers and 800 to 1000 of Ibuprofen during the day.
- Chiropractor

- and.....what I believe was the real fix was me going to physical therapy which included DEEP TISSUE MASSAGES. I am thoroughly convinced the massage therapy was what did it. I read where TMJ causes all these neck, shoulder and back issues, when I believe it is the other way around sometimes. I believe mine was stress, posture, muscle weakness, sitting at work and other things over the years caused my TMJ.

When I would get the deep tissue massages, my entire body would start to shake like I was in a freezer as the muscles unwound. I would get light headed and my face would start to spam to the point it scared the masseuse!!! It took weeks of going there twice a week and getting the crap worked out of my back, neck, shoulders, and jaw along with walking, hot tub and any type of stress relief I could find that eventually got rid of it. I do get scared every time I get tight in my shoulders or back that this insidious condition will return.

I would recommend that anyone who's X-Rays aren't showing actual degeneration of the joint, to go see a massage therapist. I am going tomorrow for my back and I will continue to get "maintenance massages."

I hope everyone here the best as I know exactly what people are going through.

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