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TMJ pain increasing while awaiting surgery. Please advise!!
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TMJ pain increasing while awaiting surgery. Please advise!!

I have had TMJ disorder for years now, but have recently been told I need bilateral TMJ surgery to replace my joints and reposition my jaw. I have seen numerous specialist in my town as well as other towns to ensure that this is the correct treatment for me. I have tried several non surgical treatments as well with no results. I have been taking Hydrocodone for pain around the clock, as well as anti inflammatories and muscle relaxers. I have recently been taking Percocet for the pain. The past two weeks, my pain has increased significantly. It is now a sharp, stabbing, constant pain. It never lets up. It feels like something is wrong. It is so intense that I actually throw up from the pain. I am scheduled for surgery in December. I was told at the ER that they cannot call in an emergency doctor to do the surgery unless my jaw is fractured (this was months ago). Now it feels so much different and extremely painful, even with the Percocet. I feel like there is a fracture along the upper jaw. I am going to call my doctor first thing Monday morning to request additional medications and schedule another MRI. My last MRI was taken in June 2008 and it showed that there was very little tissue left to lubricate the joints. My doctor said that once I "wore through" that tissue it would become more painful, but I did not expect it to get this bad. It feels like bone grinding on bone. It swells up and it locks into place each day. I cannot wait till December, but the surgeon broke her hip and that is why I am still waiting. I was scheduled for September, but she fell and now she is healing. The other surgeons said my case is so complicated that they did not feel comfortable doing it. There is another surgeon in town who would do it, but he does not accept insurance and it's a very expensive procedure. Do you think there could be a fracture? Would another MRI increase my chances of having the surgery done sooner? I have been on bedrest for 4 months. It gets worse each day. I simply cannot deal anymore. Please let me know what you think. If you think it could be fractured. Thank you.
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Avatar_m_tn
Surgery may correct structural deformity, which may or may not be the cause of pain. Occlusal therapy is highly effective for tmj associated pain. Seeing a competent tmj specialist is advised.
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650464_tn?1323718271
It sure could be "bone on bone"!  And could also be fractured.  I also suffer with TMD, some call it TMJ, depends on the specialist I guess.  My right side is my worse side.  I have 1/2 of the bone on that side compared to the left.  They've actually had cases, I'm sure many, where the bone just "snaps", my bone loss is due to osteoporosis, and know that that can happen to any bone in your body.  I have had TMD since about the mid '80's...it is extremely painful at times.  I see a very good specialist here in Oklahoma City for mine.  He made a "mold" of my mouth and made me a "splint" that I have to wear every single night.  When I have an especially bad "flare", I actually wear it during the day as well.  All I know is without the splint, it would be even worse!  It prevents you from "clenching" at night, which was my main problem.  A lot of people with TMD grind their teeth, mine is clenching.  

Was doing some searching just now and found an interesting website you could check out.  www.doctorspiller.com/occlusion.htm it explains in detail about all of this.   Did the ER do an x-ray?  Find you a very good dentist that specializes in TMJ, and make an appointment ASAP!  I would also ask to have my pain pills changed or at least increased in the dosage!  YIKES!   My specialist also prescribed a cream, which is Lidocaine and Prilocaine cream, 2.5%/2.5% that I rub GENTLY on the outside of my face where the joint is, three times daily.  I understand exactly the pain you're going through.  Will the other surgeon let you make payments?  Is there another ER you can go to?  Hopefully some of this information helps.  Abby
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Avatar_f_tn
I had a new MRI done last week, the last one was done in June. I have also had a CT scan done at the ER. I am still waiting on my MRI results to get read by the doctors. I spoke with the surgeon's nurse the other day and he said that the surgeon may not be healthy enough to do my surgery in December, so it might be more like Feb. I have an appt for another consult at a university out of town with the chief of oral surgery in late Nov. I have seen a number of specialists, including dentists, facial pain and tmj docs, university docs, cheifs of oral surgery, etc. I have been on Percocet for a month now, and I just spoke with my Primary care doctor yesterday and he wants to pull me off all my meds and send me to a pain management doctor. My surgeon does not want me to have any more injections due to my previous experiences with them. I have had them done by several oral surgeons, dentists, and facial pain/tmj specialists. They made my pain much worse, so I do not want to do any more injections. I have had a splint made by a dentist, and then another made by a tmj doc. I wear it at night, but my pain is still totally unbearable. I take muscle relaxers, and anti inflammatories as well as the Percocet. I am so scared that the pain mgt. docs will only do injections and not want to help me in other ways. I wanted to see if any of you have seen a PM doc for your TMJ. What are the treatment options? I have my surgeon saying not to do injections, and my primary care doc saying that he does not want me on meds anymore. If I have to wait so long for this surgery, then someone needs to do something to help me! I have been taking narcotic pain meds for 4 months (+). Now they are worried and want to take me off of them. I do not abuse the meds and only take them when needed and as directed. He closely monitors them to ensure this as well. That is why I am so upset that they don't want to deal with me and are passing me off to another doc. I have seen at least 10 docs of different specialties. They all say I need surgery and must be in a lot of pain, but don't feel comfortable treating me for pain. I don't know what to do. If anyone has had experiences with PM docs and what sort of treatment they do for TMJ, please advise. I want to know what I am getting into before I go. Thanks for listening and thanks for your help!
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Avatar_f_tn
P.S.
I work in the dental field and have had acess to a lot of specialists, but they all recommend surgery. No other tx options for my condition per the docs. (like 10 of them)
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Avatar_f_tn
i have a situation myself.  i have severe tmj. need surgery for joint replacement surgery and need my jaw re-aligned. BUT BUT so i have been getting massive doctor bills in the mail.  im like what?? because i have insurace....great insurance actually. i just found out tat apparently the company i work for has an exclusion in their health ins policy that they dont want anything to do with TMJ covered...no doc vists, meds, physical therapy....NOTHING.everything has to be out of pocket.  

WHAT???  what am i gonna do?  anyone else been thru this.  the pain is all but unbearable.  way worse now that the cold weather is here.....

any ideas?  what am i suppose to do? is there another way to "code" this to insurance so it can be treated?
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Avatar_f_tn
Ouch. That *****. I would call your doctors office who is treating you for the TMJ and ask them what codes they may be able to use. Maybe they can code it, but I am not sure. I have worked in the dental field for over 8 years and deal with dental insurance regularly. Every plan is so different and has so many limitations. You may have trouble getting a new insurance because it may be considered a pre existing condition. I have had that problem in the past with my back/hip problems and they won't cover anything to do with that issue. My tmj was luckily diagnosed by the surgeon while on this plan, so that is covered. I would check into it a little more. If it is health insurance, I don't know why they would code tmj as not a covered medical condition. If it is dental insurance, then some plans don't cover tmj, as it is a medical issue. It really all depends on your insurance and provider. Some dental plans cover some tmj treatments. I have never heard of a medical insurance denying just tmj disorders! That would not be fair. So many people suffer from tmj. I would dig deeper and see where that can get you. Insurance companies are a pain in the rear!! :) Maybe there is just a waiting period until certain treaments/conditions are covered. Let us know how it goes and if the company is helpful! Good luck. I know how you feel. I have been thru this mess before! Take care.
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Avatar_f_tn
well, it isnt my insurance company that wont cover it per se.  my employer had some exclusions put in their policies.......medical conditions they wont cover and tmj is one of them.  so when i talked to the people at my insurance company,  they said any and all treatment i get that is related to tmj would cost me out of pocket.  im like whaaaaaat? i said so when i get surgery to break my jaw, etc  i gotta pay for that ??  she said yes.  well, please--that will never happen!!!  not to mention, i need updated xrays, mri's, etc and cant get those now. i need stuff for the pain....cant get that now.  need a mouth guard......cant get that.  
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Avatar_f_tn
currently, what meds do u take for ur TMJ?
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Avatar_f_tn
I have tried tramadol, anti inflammatories, hydrocodone in the past. Then they put me on Flexeril and Percocet, but are pulling me off all meds now and sending me to a pain mgt. doctor for him to treat my pain.They are worried I will become addicted to the meds. I understand that, but it's not my fault they keep rescheduling my surgery date. It's not fair and I am hurting so bad. I know that my surgery is VERY expensive, so I can't imagine what you will do to pay out of pocket for yours. You need to search for a new medical insurance that will cover pre existing conditions. Or one that just has a waiting period on pre existing conditions (typically 6-12 months). I don't know what you will do in the mean time, because they will want MRIs and CT scans in order to treat your pain. They have to make sure it's a "real" condition first. They made me do 4 Panograms, 2 MRIs, and 2 CT scans before they really believed me. I am only 25, so initially the doctors thought I was some sort of junkie looking for meds. I was not even asking for meds, I was just asking for help and a diagnosis. Not many docs will even want to help you without insurance. That *****, but it's how things work. Do you have any dental coverage? If so, you can see a dentist for trigger point injections, and they can make you a splint. I worked for dentists for many years, and some will do the trigger point injections in office, and will make you a great splint from their labs. It will be coded as dental too. If you explain your situation, you can most likely continue care with the dentist until you find a new medical plan and exhaust your waiting period. You have to find a new plan. Your condition will get worse and then you will be stuck in a bad situation. I started out just seeing my boss for treatment, and then by the time I had to wait to see the specialist, then get second opinions, then wait for a surgery date, my pain has progressed to the point where I cannot work or function. I don't want to see this happen to anyone else. You may not have it so bad, but you don't want to risk it. You need to get in to see a dentist, or talk with the docs you have already seen and see what they recommend you do while you wait for a new insurance plan. I can tell you a lot about different plans, but I live in Florida, so they are different from state to state. You really need to start your research about new plans asap. Get quotes from the companies on individual plans and find one that covers pre existing conditions after a short period of time. In the mean time, ask the doc you have already seen if he can help you or recommend someone who can. Find a good dentist with tmj experience. I hope this helps. I am screwed too. I am being referred to yet another surgeon because my surgeon broke her hip and has rescheduled me several times. Now she is not sure she can do it till next year. I know I cannot wait that long. I was also fired from my job, because of my extended medical leave, and to keep the insurance plan that covers tmj, I have to pay a ton of money to do cobra. I know it is stressful, but try not to get yourself too stressed out because that will just cause your tmj to flare up. Good luck and let us know how it goes.
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Avatar_f_tn
how does that work tho if i pay for insurance thru my employer......i mean, i cant really afford to pay for independent insurance because i have great insurance thru my work. i just cant believe  they  have this xclusion!!!!!  it is my luck tho it really is.

they wrote me flexeral too but i didnt ever take it because i was afraid it would make me really tired, does it? that elevil knocks me out and i cant be all droggy and what not so i though flex would do the same...........so i never took one.  please let me know how u like that???  i took tramadol too but again, that is weak and i didnt think it helped me at all. did u?

im 29 and due to our age, i agree with u....that sometimes u cant get what u need because of the drug prob nowadays....

yeah my MRI, xrays etc were all done years ago and i know my stuff has changed and need new ones.  plus, like u said, pain mgmt requires all that suff.  my family doc referred me to pain mgmt but i have NO idea how that will work because #1 i dont have new mri's etc and #2 they will consider this TMJ and once again, my company will not let that be included.

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Avatar_f_tn
Yeah, you would have to do like me and pay a ridiculous amount of $ each month for indepenant insurance. I have to pay over $1000/month just to keep myself and my son on the plan, so that my condition will not be considered a pre existing condition. You would have to research indepenant insurance, and cxl your work insurance. It will be VERY expensive and good luck finding one that covers pre existing!
Yes, the flexeril is a muscle relaxer and it knocks me out cold. Do not take it if you are working/driving, etc. Tramadol is useless for my TMJ pain. I would be better off taking advil. I also have a weird reaction to it and feel like I am having horrible anxiety/panic attacks. It is weird. Pain mgt. docs will make you do all new MRIs. I had to pay out of pocket a couple years ago when I did not have insurance, and it was about $900. It is probably more now!! They also charged me $350 for my first visit and like $200 for every other visit after that. Then I had to do a procedure where they did injections at the local hospital and they charged me a few thousand for that. I just finished paying them off about a year ago. It was super expensive. It would honestly be cheaper to try to find a new insurance plan that covers pre existing and cxl your work one. I know it *****, but there is not much else you can do. I feel your pain. I was fired due to my extended medical leave, don't qualify for disability, and cannot collect unemployment. I also had my insurance cancelled and had to go cobra. When it rains, it pours. I know how you feel. It feels like no one will actually help you and that they don't even care. The docs just want their money. That is how I feel anyway. Let us know how it goes. Good luck!
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Avatar_n_tn
For those with bruxing issues try Lamactil with Gabitril.  You may also want to try Lexapro or Welbutrin with Gabitril.  These drugs coupled with Gabitril may inhibit bruxing by altering the functioning of the trigeminal nucleus, or perhaps by inhibiting afferent stimulation, in some cases.

For pure pain issues, Lamactil has been consistently shown effective, while Lexapro and Welbutrin are anecdotally reported effective in some cases.  I hope this helps.
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