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Hello All:

I am tam bam and I would like to introduce myself.  I am a post surgical tmjd sufferer.  I have severe arthritis on both sides.  I had 2 surgeries about 3 years ago and the last surgery failed on my last year.  My first surgery was arthrocetisis surgery and when that didn't help the surgeon had to cut me open and go in.  I had an MRI before both surgeries but it didn't show the full scope of the problem especially on my right side which is the worst side.  The MRI did show a bone spur on my left side with disc displacement but nothing on the right side except for a displaced disc and my pain then was mostly on my right side.  The surgeon and I both thought something was very wrong on the right side so we decided to go ahead with arthroplasty surgery.  When the surgeon opened me up on my left side all he could find was the bone spur we had knowledge of and he got rid of it and sewed me back up but when he opened me up on the right side he found the problems causing me dire pain.  He found a rather large bone spur on my eminence and after getting rid of the bone spur there he found a rather large cyst behind it.  So he cut the cyst out to relieve some of the pressure I was feeling in my jaw.  The surgeon was shocked about my right side.  He told me a cyst is quite rare in the tmj area.  He also had to sew the discs back into place and anchor them down.  The disc on the right side was actually impaled right though the middle of the disc so the surgeon had to take it out and sew it back up and place it back into my jaw and anchored it down. 

To make a long story short I was also having another medical problem going on at the same time all this was going on and come to find out I was having a rare drug reaction and the drug reaction caused dystonic reactions (uncontroled movements).  The dystonic reactions were affecting my neck, mouth, tongue, back and eyes at times.  The reactions were causing me to open my mouth as if I was yawning.  I had no control over these reactions I was having and the sheer force of me opening my jaw wide caused disc problems again on both sides.  I went back to the surgeon (he was also aware I was having a another medical problem at the time and was really worried about the discs in my jaw also).  The surgeon ordered another MRI and I went but I was having one of those rare days where I was having no jaw problems and no pain.  Well, the MRI showed nothing but a bunch of swelling on both sides.  I couldn't open my mouth wide enough at the time of the MRI to make the discs come out because of the swelling.  Oh yeah, the surgeon took an x-ray and told me that the right side was deteriorating.  After the last MRI results the surgeon told me the only thing he could do is another arthrocentisis, but my moto is if it doesn't work the first time do not waste any more time or money doing it again.  So I told the surgeon no thanks and moved on.  I started to get really sharp headaches and then I started to get these jolts of electricity type pains on the sides of my face and cheeks.  Mainly on my right side.  I was nauseated all the time and my jaw kept swelling on both sides even to the point where I would have red blotches on the sides of my face.  It was horrible!  I then went to see my PCP and she only prescribed Darvocet at first and then when that didn't work she prescribed Hydrocodone.  Well, that didn't help either and the electricity type pain was getting worse.  After I informed my PCP the Hydrocodone didn't help she told me to try Darvocet again.  I told her that I wanted to be placed on an anti-seizure med to help with the eletricity type pain because I was suspecting I was having nerve pain and she told me I didn't have the symptoms of nerve pain and that anti-seizure drugs were only used for nerve pain.  I then told myself to face the facts and to give up on her because she was not getting the picture here so I called her office and requested that she contact a pain clinic in the area.  My PCP thought that was a good idea (why didn't she just do this after the Hydrocodone didn't work is beyond me).   The doctor at the pain clinic happily accepted me and on my first visit he told me he had experience working with post surgically tmj paitients.  I was elated.  The doctor then informed my I was having nerve, joint and muscular pain.  He told me I was probably correct about the disc displacement issues also since I am hearing popping and cracking noises.  I can also feel the discs move in my jaw .  It is very painful. The doctor told me never to have a surgical procedure in the tmjs again, EVER.  The surgeon however, informed me on my last visit that I would evetually need total joint replacement on both sides but he would try to delay that for as long as possible.  The pain dr. has helped me out so much.  I have to take a handful of pills everyday and get a steriod shot every 3 months but at least I don't suffer as bad.  The swelling in my jaw was getting so severe that nothing was helping but the steriod shot helps a lot with that issue.  I still get break through pain and swelling but at least I can tolerate it better.  The steriod shot and neurotin has really helped with my nerve pain. 

Now that you part of my story, I hope to get better acquainted with everyone.  Glad to be here!

tam bam

P.S. - I posted this also in the tmj support forum not realizing it was the wrong place to post it.  Please excuse me as I am learning these forums.