Open Joint Surgery for Perforated, Displaced Disc - TMJ Disorder -TemporoMandibular Joint Message Board

lawya_bunny · 12-17-2004, 12:27 PM

Hello! I just found this board and am glad to know there is a support group out there for people like us! Here's my story:

I am 31 and my jaw has been clicking and popping (painlessly) since I was 13. At that time my dentist made a splint for me to reposition my bite (he said I had an over-bite). My bite changed, and the clicking got better, but never went away 100%.

When I was 18, I fractured my left jaw during a fall. I had trouble opening my mouth as a result of the fracture. My mouth was stabilized by rubber bands by an oral surgeon for about a week. Eventually, the fracture healed and I regained jaw mobility shortly thereafter.

When I was 20, I got braces on my top teeth for about a year. The clicking still continued, but only when I opened really wide.

Now, at the age of 31, I am experiencing daily headaches, tension in my neck and shoulders, and very very sore jaw and temple muscles! I grind my teeth at night and clench during the day. My jaw clicks only when I open really wide. I can generally eat whatever I want, except for maybe beef jerky. The pain I have is about a 2-3 on a scale of 1-10, but it is constant.

A year ago, my regular dentist made a night guard for me to protect my teeth from the grinding. A few months ago I went to see a TMJ specialist (a dentist), who made another splint for me that has a "ramp" to prevent my lower jaw from sliding back. This has not produced any results!

So finally I saw another TMJ specialist who is an MD and a DMD. He specializes in TMJ disorders and surgery of the head and neck. He is also a plastic surgeon. He ordered an arthrogram for me. The radiologist's report says I have a "perforated, anteriorly displaced articular disc, most often with late abrupt reduction" on BOTH SIDES.

The surgeon told me that my displaced disc was at STAGE 5 (the most advanced state of displacement and soft tissue degeneration), which is unusual in someone my age. He says that a splint won't help and neither will other non-invasive procedures. He wants to do bilateral open joint TMJ surgery with graft. He would move the displaced disc to its correct position and then take cartilage from my ear to repair the hole in my disc. If I don't get this surgery done, my doctor tells me that eventually the tissue will completely degenerate and then my bone will begin to dissolve!

I have never had surgery before (other than wisdom teeth extraction) and everyone is telling me to get a second opinion, which I intend to do. I would be interested in hearing from anyone who has had this procedure done or who has the same condition I do. I'm hesitant b/c my pain is not debilitating, despite the advanced state of degeneration in my soft tissue. I have tried analgesics (Advil, Tylenol, Tylenol with Codeine, Aleve) and muscle relaxants(Flexeril, Zanaflex) to no avail. I have received chriopractic treatment, weekly massage therapy, and acupuncture, none of which has produced any relief either. Since I have exhausted non-surgical options, maybe I would be an appropriate candidate for surgery after all?

Thanks everyone!

LB

rubato · 12-17-2004, 12:43 PM

I too have this condition. 10 years ago, I had arthroscopic surgery on both sides. My doctor put the discs back in place, but told me that there was so much perforation, I would probably have to have surgery again. I was pain free for about 9 years with this procedure. I am now being told that my discs must be removed completely and he doesn't believe in disc replacement. So, I'm going to have this done in a few months. I am not pro surgery by any means, but I have exhausted every non surgical option as well, and my pain is debilitating now. I am not sure about your case. If your pain isn't that bad and you do have a decent opening, I don't understand the need for surgery. A second opinion is always the first step, no matter what they tell you, so I'm glad you're going to do this. I'm sorry I can't be of more help. Good luck and keep us up to date.

juulie · 12-17-2004, 02:50 PM

I agree with rubato, if your pain level is a 2-3, I would try to put off surgery. Many of us here are at much higher pain levels than that. I have tried everything and have had two surgical opinions but have not decided what to do. I am very reluctant to have any surgery because it seems a lot of people (including attibert) are worse than before. I will tell you that both surgeons I met with said they refuse to take cartilege from another area and put it into the disk. They both said it is rarely successful. One surgeon wants to put in a Christensen-fossa metal implant and they other wants to take out the disk and not put anything in it's place. Neither sounds very good to me.

oldpal · 12-17-2004, 04:00 PM

Dear LB,
Surgery willl most like cause more problems then relieve. DON'T DO IT!! If it's just an displaced disc, seek a experience FJO dentist. They know the relationship between teeth, jaw, muslcle, and joint. Get a second opinion from them. I can not guarantee you that every FJO is experienced. but you need to find one that's experienced in FJO, and that can tell you the truth.
I really don't like "tmj" specialists because most likely they're looking at our wallets then our pain. I can tell you this, most "tmj" cases are easily treated. The hardest part is finding a dentist that knows what he/she is doing.

good luck to you,
oldpal

lawya_bunny · 12-17-2004, 05:07 PM

Thank you for your responses and input. It makes sense not to undergo invasive type surgery when my pain is only 2-3. However, what I am worried about is that I am at Stage 5 in internal derangement and tissue degeneration. I guess it's weird that I'm not in more pain. Plus, there is a hole in my disc. Is that OK? Even though I am not in tremendous pain, do I really want to wait until my bone starts to dissolve before having the surgery? Besides, they say pain relief is a poor reason to undergo surgery. For me, surgery would be a corrective measure taken to repair a pathological condition in my soft tissue, rather than for pain relief. My health insurance has a $10,000 lifetime max on all TMJ related procedures, so if this surgery ends up screwing me up more than I already am, I won't have any more coverage remaining to deal with this. Is anyone from the Portland, OR area who could recommend someone for a second opinion?

Thanks!

LB