Hi, Its been a long time :( - TMJ Disorder -TemporoMandibular Joint Message Board

meditation · 02-13-2007, 06:47 PM

Hello, everyone.
It's been a long time since I've been on here. I've been a 'ghost', reading your posts and feeling for all of you.

And, then there is me. For those of you who remember me, I have been thinking of you a lot...and, your progress.

I am now 32 years old. And, on my 31st birthday (2005) I had a total joint replacement of both my TMJ's. This was a result of me going into a restaurant and biting on a metal screw in my dinner.

But, anyway, my progress has been horrible. Since the surgery, the severe pain is overwhelming. I am okay that my opening will never be the way it was. I have become used to the wierd noises that I hear. But, I am close to shutting down from the pain. Plus, I still can not feel the right side of my face. My hearing goes out. And, the vision in my right eye goes out, at times.

I have been to my surgeon, numerous times. He is no help. He continuously tells me my problem is not surgical and thus they can not help. He tells me to go to a pain mgmt. doctor, which I have been since before the surgery. He has no answers. He tells me the joint is fine. But, I can not even touch parts of my face because the pain...oh my the pain. I can not wash my face properly. I can not do most PT, because he tells me I can not have heat near my face.

I am on 5 different types of meds...to just get through the day. Though, the pain does not go away, at all.

I am trying to figure out what to do. Doctors don't want to see me...because of my condition. I can not even get my teeth clean because no dentist wants to touch me.

Whew. I know. Lo-o-o-ng. I guess the first is this. Do any of you know of any new treatments for pain? I am okay with never opening the way I did. But, the pain is too much for me. (It's been close to 3 years.....this time).

Two, for those of you considered a replacement, pls. pls. think about what I told you. For some, it does work. I know. But, at this moment, I guess I could be considered a worst case scenario. Just pls. do your research. Make sure it is something you need, not want. The surgery is at least 8 hours long. And, you have to have it repeatedly..more than once in my life. It lasts usually (according to the studies I've read) 5 to 15 years. I will need this surgery at least twice in my life. So, pls. make sure this is your absolute last resort.

I am a college professor who is in extreme pain. That is significant because my job is talking. And, the pain hurts so bad that my ears hurt by the end of my lecture.

Take care all out there,
Meditation

Thelma-Louise · 02-13-2007, 07:50 PM

Welcome back Meditation - I do remember you from when I started 3 yrs ago - you were the only one who seemed to have the same level of pain I have - even more so. It amazes me that you are even able to work since I have not been able to for 3 yrs - some days I can't even recall my own name.

I wanted to ask you if you have ever looked into the nerve blocking injections they use on people with spinal cord injuries - my bro-in-law just started a new one (new for him at least) that has him literally elated b/c his pain is more tolerable - the first time in more than 25 yrs. And its not causing other side affects like being drowsy or out of it. But it has to be repeated every 3 mos.

Also have you ever gone to other specialists other than in your own area - there is an OS in Boston that a few members spoke highly of. Personally sometimes I think the dental community is exactly that - a community that gossips about each other and that once the word is out that you are a "chronic problem" you get ostracized.

I defintely know how you feel - I have had several drs literally run once they look at me or hear all my symptoms - a few were kind enough to tell me not to make an appt with them b/c they knew they could not help me. Its very disheartening.

I do think of you though - especially on very bad days - b/c I know there are others putting up with the same pain or even worse - and if they can do it, then so can. So you remain kind of llke an inspiration for me.

Rawspice · 02-14-2007, 05:48 AM

How do you work if you are in so much pain?

I really feel for you and I wish I could say something to make you feel better, but I don't have the answers and I am in a lot of pain like you. That's awful that your TMJ started after biting on a screw, How unlucky! Hang in there, try and stay positive!!

Clencher · 02-14-2007, 01:22 PM

I am so sorry that you are in so much pain. I don't know if you have ever tried some of the anti-depression meds, but some of them have nerve blockers in them, for instance cymbalta. The only thing is, I have also understood that depression meds can cause you to clench more. My thought on that for me is that I don't think it is possible for me to clench any more then I already do!!!
I will be praying for you. I don't know if you are involved in church or if you even believe and have accepted Christ. I say that for this reason, when I feel like giving up because of the discouragement from my TMJ problems, I think of Him and what He did for me on the cross. He's right there holding your hand. I love talking to Him just as if He were right here with me. Kind of like talking to my own dad. He doesn't say that He won't put on us more then we can handle, what He does promise is that whatever we go through He is right there with us.
Keep on keeping on Meditation!

delilah1963 · 02-15-2007, 06:59 AM

Hi Meditation,

Have you visited the pain management board? Shoreline, a frequent poster, may be able to offer some options to look into. He is the patriarch of the board, if you will. (A position no one would want.) He has a pain pump and it has increased the quality of his life.

I'm sure there are ideas from other posters there too.

I pray for some relief for you.

Del