Pain management for chronic and severe TMJ disorder.

[tmjpain25]

I am awaiting surgery on both sides of my TMJ. I have been on bedrest for 4 months. My surgery is scheduled for December. I have been taking hydrocdone 10mg 3-4 times per day as well as 800mg advil. I have recently been prescribed percocet 5mg every 6 hours. This is the only medicine that actually dulls my pain. My condition is chronic and can only be helped with extensive surgery. I have seen numerous specialists in town and out of town. I have tried non surgical treatments for over a year with no results. I have had a bite gaurd (made my the facial pain specialist) for over 8 years. My MRI in June showed that I only had a small sliver of tissue left in my joint space and the doctors said that once I wore through that, it would become much more painful. I now feel like a hammer is driving a nail into my jaw over and over around the clock. I want to have another MRI done asap. I think I have a hairline fracture or something. It feels like bone grinding on bone. I have dealt with this pain for a very long time, but it is so much more intense now and different. It is much sharper and severe. Anyone else had this happen? I have been to the ER several times in the past 6 months and they say that my pain levels "should be thru the roof" and so on. I have been told that my case is so severe that it could fracture at any time. I think it is finally fractured. I am dying here. The percocet dulls it slightly, but the pain gets worse each day. I am also on alprazolam to sleep at night. I can't even sleep with the meds. I am going to call my doctor first thing in the morning to get in right away and get another MRI and another prescription. I know he will not want me to take the strong pain meds for a long period of time, but they are the only thing that works for this level of pain. I do not abuse them and I take them only as instructed. The prescription should have lasted me 11 days, but I actually made it stretch out longer. I am worried that he will think badly of me if I call on Monday to request another rx. I have to have my husband get them for me because I don't drive. Any help or advise would be greatly appreciated. I cannot take the pain any longer. I just don't want my doctor to think I am a bad person for needing additional meds. I am hurting so bad and want to talk to others who are in the same boat.

[sandee1818]

I am so srry you are having to go thru so much pain. It is understandable that your doctor does not want you to become addicted but you have a medical problem that requires treatment. You could try another pcp and see if they can help you out with some meds and some do treat CP pts so it is worth a try. I know Tuckamore does not see a PM Dr but a pcp so its possible you could get some help thru another pcp.
Also you could ask if your Dr would be willing to give you some ultram it is better than having nothing at all. I take an extended release narcotic and I have taken just the ultram when I am out of my regular meds and it helps better than an over the counter medication.
Also you can try the ER, tell them you were taking a narcotic but want to try the ultram to see if it will jhelp and they will giveyou a script.
I have never been turned down at a ER for ultram, most docs are happy to write it instead of narcotics. Just an idea. Keep us updated and let us know if we can help any futher.

[tmjpain25]

Update: I finally got thru to my primary care docs office!! I called an demanded to speak to the nurse and they said she was busy and they could give me her voicemail. I refused and said I would hold until she was not busy. Well, after holding for awhile she came to the phone. She apoligized for the long wait and said that she had recieved my many messages, and had already done the referrals, and was ready to fax my records today! I called to PM doc and they said they had recieved my ref. but needed to get more info from my doc, so they would call sometime next week. I then called the nurse a my docs office again, and she did another ref. to another pm doc in town. They are closed today, so I will get a call next week. They said they will not be giving me any more meds and that I just have to deal with it till I see the PM doc. I called my surgeons office and the nurse there said that my surgeon is not doing well at all and may even be retiring early due to her medical condition. She was told by her doc not to do surgery and she won't come back to work till a year from now. So that one is out of the question. I still have one more oral surgeon to see in late Nov., so I have to hope that he will help me. The nurse was nice enough to call the new surgeon a few times for me to see if they can get me in sooner, but they have never called back. So it looks like I am SOL till end of Nov. as far as meds and dealing with this pain. The PM docs said they don't have any openings till early to mid Dec. because they have to verify some info with my docs. I am so sick of all this. I will post updates of course. At least they finally talked to me to let me know about everything, but no more meds. They kept saying "you just have to deal with the pain until you see a new doctor". I have a very small amount of meds left and have been very careful about taking them when the pain is so bad I want to die. I have been in bed for days. I can't do anything with my son (2 years old) or clean the house or anything. My husband is fed up with all this and wants someone to "fix" me so that I can be normal again. At least when I had the meds, I could do some normal activities, like playing with my son, giving him a bath, dishes, laundry, etc. Now without any meds, I can't do much of anything. I just wish they would understand that if I needed the meds 6 months ago, and my condition is progressing, that I would obviously still need the meds. Ya know?? I totally understand the risk of addiction, and I am totally willing to do anything needed to help me after the surgery. But they first need to rid me of the pain so I don't need the meds, then deal with the "possible addiction". It just does not make sense. I am now totally afraid that when I finally do see the PM doc, they will have notes from my primary care doc, stating that I am some sort of an addict, and they will not help me either. I am worried that I am being labled something I know I am not and that it will affect the treatment I recieve at the new docs office. I now have a huge stack of every single note from each doc I have seen, as well as all my MRIs and prescription history to take with me to the new docs. Hopefully they will treat me like an actual patient and not some druggie. Will post updates next week. Thanks again for all your support!

[bev62]

I am so sorry for your pain. My daughter just had tmj surgery and
I know the pain she had, and it was only on one side.  She had a hard time finding a doctor that could do the kind of surgery she needed because it was so bad.  She found one in Charlotte NC and he did an excellent job.  It was tough the first two weeks but now she is so much better.  They made sure she had the right kind of pain meds to keep her from suffering.  The surgery took about 4 hours. She stayed in the hospitol one night. They cut her from above her ear to the bottom of it.  She just went back for her month check up and the doctor was very pleased, she is opening her mouth twice as much as before surgery. She is 25, and they couldn't believe her jaw could be that bad at that age.  
I'm sorry you have lost your job.  You would think a dentist would be more understanding with this kind of situation.  Good luck, I will be praying for you.

[sandee1818]

Have your husband relay to the doc and nurses the severe amount of pain your in and ask them can they give you a presciption until your appointment. Also make sure he gets the paper work you need for the new Dr.
I am so sorry your in such pain, do not let the bills at the ER stop you from going to get help. You can pay what you can afford each month even if it is only a dollar a month.
Explain the situation to th ER doc and see if he will be willing to help you out some. I can't see a doc turning you away considering the circumstances. I know they do and this is because of the many who abuse them and their compassion for people in pain.

[tmjpain25]

Thank you for your kind and helpful posts! I spoke with my husband about it, and he said if I cannot get them on the phone by Friday morning, that he would call and if needed, go up there. I can't really get him to take me up there because he has been working crazy hours to try to make up for me not working, so he can't miss work. He is scheduled to do site inspections at work tomorrow, so he can't miss.
I do use ice/heat all the time to help a little. I take anti inflammatories around the clock. I try my best to do the jaw excercises that my surgeon wants me to do, but I can barely open my mouth. I have not been able to brush my teeth without pain from the opening! I cannot floss either because it hurts so bad to open my mouth for that long. I am a dental assistant who can't even take care of her teeth! This has gotten way out of hand.
I am scheduled to see the chief of oral surgery at a university hospital in late November. I hope that he will help me. I have already seen dentists, tmj docs, facial pain specialists, oral surgeons, an arthritis specialist, and primary docs. They all state the need for this specific surgery, but the only one who felt comfortable doing it is injured! The other chief of oral surgery I saw a few months ago, told me that I needed the surgery, but that since I am so young, they would not do it at their facility. They said that "this is a teaching hospital, so we cannot train the new surgeons to be agressive with someone your age." I got the copies of all the notes from that visit, and he wrote that I needed the surgery, but that someone else would need to do it, and then they referred me back to the original surgeon who diagnosed me. She is not healing fast from her injury, and they are saying maybe January, but more likely to be Feb. or March before she can come back to work. The new surgeon I am about to see has to verify my health insurance because it is out of network, and after my consult they will submit a pre authorization and it may take up to 8 weeks. I am so frustrated. I am in so much pain and have not worked in a long time. I am now trying to file for unemployment. My boss fired me a couple weeks ago due to my extended medical leave. I have never been fired. I have worked as a dental assistant for over 8 years. I just want to get better and get back my life.
I will bug the heck out of the docs office Friday am, and let ya'll know how it goes. Thanks so much for all of your great advice and comments. I can't wait to see the new surgeon in a couple weeks. I really hope he can help me. It does not look like I will get in to see the pain mgt. doc before the consult with the new surgeon. If they won't even call me back for the ref. information then I don't see how they will ever schedule my appointment. I don't want to go back to the ER. I owe them a lot of money from the last couple times I went too! They just said I need surgery and told me to see my surgeon. They also said they could not call in a surgeon to do the procedure on an emergency basis unless my jaw was actually broken. I am starting to feel like maybe I should just break it myself and then maybe someone will actually care! I won't really do that, but it has crossed my mind! :)
Sorry for the long rant. It feels good to have people to talk to about all this mess. Thanks again for all your help and I will talk to you soon!

[sandee1818]

Go to the office or have someone drive you! This is pt abandonment and you have rights!
Make them call if they have not already while your there , sit and wait until you have an appointment set and the referral papers in your hand! If you insist they do their jobs they will/ If you have trouble that way just tell them you will see what constitutes pt abandoment in your stae and you will be in touch.
This will get them off their kiester!
Remeber they are working for you. You pay them for a service and if they are not provivding it then you do have legal recourse.