I'm so sorry to read about everything you have gone through. Your case is so much more complicated than mine that it's difficult to come up with any helpful ideas. I can think of two ideas, and you may have already tried them, but here goes -

pain management - seek a pain doctor, neurologist or clinic (you may have to travel to find a good one) who will be able to prescribe long-acting pain relievers such as methadone or oxycontin, etc. Also trigger point injections might help. Tens, ultrasound, etc.

The other suggestions is regular therapeutic massage by a trained therapist in tmj, pressure point or cranial sacral work. Massage is different in that you will go to the therapist for a long period of time, not like physical therapy where they have a time goal. It might end up being once a week for a while and reduce to once a month. You might end up having to try 2 or 3 or 4 therapists. It can be difficult to find the right therapist, but when you do, it is great.

Oh, another idea is to get a 2nd and even 3rd opinion when it comes to a point that another surgery is a possibility. You might even do that now and see what other tmj "specialists" have to say about your case instead of waiting 6 months.

I pray that you will find the pain relief and help that you need. My heart goes out to you and if I can do anything else to help, please just ask.

God bless...
Carol

Hi carol. Thank you so much for your reply and kind words. It's ironic that you mentioned a pain management clinic because I just called my dr's office (my primary car Dr. Who has been treating me for my tmj) yesterday to see what she thought about me going to a pain mgmt clinic. She said she would write up the form and send it over with my chart notes and that someone from the pain management clinic will call me to set up an appt. I have no idea what to expect - do you have any experience with pain management clinics?


Unfortunately my insurance won't cover massage of any kind and we have no extra money as we only have on income (my husband is a stay at home dad). Even when I went to physical therapy and they did some massage and billed it as such they would not cover that portion of it. It just gets me that I have to pay a $25 co-pay for acupuncture and physical therapy and they don't cover massage at all yet I only have to pay $5 for my prescription of t3's...Crazy!


The 4th surgery will have to happen at some point because the silicone disk that they put in can only be in there for up to 6 years. I have thought about going to see another tmj specialist just to see if there is anything else that can be done (like maybe my bite is off or something and is contributing to it). Sometimes I worry that maybe i'm just a wimp and have a low pain tolerance or something.

What is your situation with tmj? Have you had it long? Thanks again for replying to my message. It means a lot to have that support. I know friends and family mean well but they have no idea what we experience and I know they are sick of hearing me say "i have a headache" every day.

God bless,
kerianne

Hi kerianne,
i do not have experience with pain clinics. I tried to find a pain doctor in my area but none would work with me because I have tmj. Duh, that's why I was trying to find a pain doctor - I have pain. But no, tmj is treated by dentists or its like an arthritic knee - take an anti-inflammatory and put up with it (this was their comments to me.) it was a pretty frustrating time trying to find help.

My family doctor finally found a new young neurologist who was willing to try and help me. We've had an interesting relationship but it's working out. I'm on lyrica but i'm planning on weaning off of it soon. The first drug we tried, methadone, I had side-effects from it. He also referred me to an excellent pt, but I now go to a cranial sacral massage therapist (yes, money out of my pocket that I don't have). A muscle relaxant - zanaflex - that my pd just prescribed works miracles for me. It's the only drug to ever break up a bad tmj flare-up. I'm in love with it and hope and pray it works forever when needed.

My tmj has been doing pretty good lately. I've had it for 25 years and it is a nightmare. You live for the pain-free times that sometimes don't come and sometimes do. I wasn't treated properly when it first flared up and that contributed to permanent damage (braces were put on first with no pain-relief help). That's why I try and tell newer tmj sufferers to look for good tmj "specialists." concentrate on taming the pain before working on a permanent fix. Conservative methods tend to be the best methods and reducing stress is number one in "curing" tmj.

I'm sorry to hear that you have had surgeries and are going to need more. I've heard too many negatives about surgery and I thank god that I didn't, though, I looked at doing so 3 times over the years. Of course, everyone is different, so many times surgery is a necessity for function of the jaw, more so than pain. Trying to find pain relief for tmj, though, can be very frustrating because of many doctor's ignorance. Keep fighting to get the help you need.

Let me know how the pain clinic appointment goes. Make sure to ask tons of questions as to what they are going to do, etc. Take someone with you if you want or have questions written down.

All the best for you,
carol

Hi carol,

i know exactly what you mean about being told to take an ibuprofen and put up with it. I have gone through many primary care doctors because none of them would take my tmj pain seriously. One suggested I see a psychiatrist. It is so frustrating. The primary care Dr. I currently have is the first one to ever take my pain seriously and to really try to help me deal with the pain. I am very grateful for her.

What is lyrica? I have never heard of it. I have never tried zanaflex. I am currently taking flexeril and it doesn't seem to do anything but make me tired so I can only take it at night and doesn't seem to stop me from clenching. I wonder if I should ask my Dr. About zanaflex? For pain I am taking t3's and seem to have to take them daily and when I have a really bad flare up that t3's can seem to help, I take vicodin but it doesn't seem to help much more. I don't know what the primary cause of my tmj is but I had retainers as a kid and headgear because my overbite was so bad and then I had braces on my upper teeth only for cosmetic reasons which I am sure didn't help. I have been in a few auto accidents, had my wisdom teeth out and also fell off a deck in highschool and landed on my face so I am sure there are a ton of things that have contributed to it over the years. I do think my first surgery was necessary because I had such severe jaw pain and it did help with that. At the time I remember my surgeon saying after the surgery that I had the jaw joints of a 90 year old. I really naively thought that surgery was my fix and that my problems would be all over. If I could do it all over again I would never have had the second surgery which lead to the third.....

I chose my current insurance plan because it was the only one my work offered that covers tmj and I feel lucky to have it because I know it is most often not covered. I will definitely let you know how the pain clinic appt goes. I haven't heard from them yet. I am kind of nervous going there - afraid they are going to act like it's all in my head like many dr's before have. I don't know how many times i've been told I am just having rebound headaches from taking meds daily which is so frustrating.

Thanks so much for all of your support. It means a lot. What is your email address? I would love to be able to email you off-line. :)

kerianne

I can't email from yahoo while at work very easily that's why I didn't email you earlier.

Definitely ask your doc about zanaflex. I have tried flexerill and something else and they didn't touch me. Zanaflex does make me very relaxed to the point my eyes don't focus, so i've only ever taken it at home and when I had a dental appointment the other day (mom drove).


I wouldn't suggest taking tylenol 3 every day. They can give you rebound headaches. I've never found them to work for me sadly. Now, vicoprofen works better for me than vicodin, so you might want to check that out. I try not to take any pain medication every day (except lyrica now) because I fear that they will lose effectiveness, so I wait sometimes until I am dying of pain before taking anything. Crazy, I know.

Hey I just thought - they need to come out with ibuprofen 3 (with codeine) like they did with hydrocodone (vicodin and vicoprofen). Hmmmm, where are the drug companies?


Lyrica is a long-acting nerve pain reliever. I'm at the lowest "workable" dose and I don't really know if it is working because i've done so many other things to try and help me at the same time. I recently had my bite balanced, I go to a new mt, and i've just added buspar with my prozac at night. I have to take prozac for tmj and menopause but recently read that it causes clenching or grinding while sleeping. It was suggested to add a small dose of buspar (an anti-anxiety drug) to my night pills and it might work. I don't know how the prozac helps my tmj pain anymore but when I try and wean off of it, my tmj goes bonkers. Anyway, with all those changes, my tmj has been doing much better. I hate always having to think about it though. Tmj. The devil. They sure do go together quite well. (sarcasm here)

i've got to get back to work. Hope you will email.

Carol

Hi there! I have learned that the more sugeries, the more scar tissue and the more possibility of arthritis. I am no Dr., but I have learned this thru common sense and experience. Do you use a night guard? I am sorry you have to live in this much pain! I have full body pain pretty much all of the time so I do understand where you are coming from. I wish their could be a miracle cure for a lot of us!
You are in my thoughts!

Hi carol. Thanks so much for the reply. I will email you offline :)


sandyallen - hi there. I do use a night guard and I wear it every night. I wish there could be a miracle cure for us too. That would be so great. Just knowing that there are others who are going through the same thing helps so much though so thank you so much for your posting!