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TMJ Disorder -TemporoMandibular Joint Message Board
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Old 12-17-2004, 11:27 AM   #1
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lawya_bunny HB User
Open Joint Surgery for Perforated, Displaced Disc

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

 
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Old 12-17-2004, 11:43 AM   #2
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rubato HB User
Re: Open Joint Surgery for Perforated, Displaced Disc

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.

 
Old 12-17-2004, 01:50 PM   #3
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juulie HB User
Re: Open Joint Surgery for Perforated, Displaced Disc

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.

 
Old 12-17-2004, 03:00 PM   #4
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oldpal HB User
Re: Open Joint Surgery for Perforated, Displaced Disc

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

 
Old 12-17-2004, 04:07 PM   #5
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lawya_bunny HB User
Re: Open Joint Surgery for Perforated, Displaced Disc

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

 
Old 12-18-2004, 12:41 AM   #6
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oldpal HB User
Re: Open Joint Surgery for Perforated, Displaced Disc

Can you still open your mouth wide? or is it locked half way?

oldpal

 
Old 12-18-2004, 06:37 AM   #7
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Cymy Sue HB User
Re: Open Joint Surgery for Perforated, Displaced Disc

Hi,

I had this exact surgery in 1992 for severely shredded, dislocated disc.(both)
I had been in unexplicable pain for many years and had an opening of about 10 mm.
I had several previous surgeries including the jaw breaking procedures, twice, due to it being the 80's and they thought this would correct TMJD at that time. This was also prior to MRI's and they didn't know I had abnormal joint structure (probable birth damage) and shredded disc.

I had 2 good years. I then realized the old problems were returning. I went back to the surgeon in 1994 and he determined the ear cartilage grafts were shredding as my original disc had. I ask for grafts again, as I had been told "if" anything happened to the ear cartilage, I could have rib cartilage grafts. However, they had told me they didn't anticipate anything ever happening to the ear cartilage.

By 1994, they knew this type grafts was not holding up nor was the rib cartilage and they weren't doing any autogenous grafts anymore. From information I've read, most grafts hold up from 2-5 years, occasionally 7, but the norm is 2 years. I was given the option of a discectomy without replacements and told it was the best they could do at that time.
I managed until 1997 and had the discectomy.
I had bone deterioration during these years that resulted in necrosis or bone death. It appears the deteriorated discal material causes the bone to deteriorate. Once the disc were out, the bone stopped deteriorating and over a period of a few years, the body will absorb the deteriorated bone in most people and new bone which receives blood and oxygen is left.


I was told later, the discectomy was the only surgery I should have had and it was needed. The position of the torn and shredded disc caused incredible pain, both times. The disc caused bone loss.

A disectomy is a tough one to get over, but if all goes as planned, scar tissue will form between the bones and act as a padding. The muscles will reposition or splint (muscle splinting) and maintain function.

I had over 5 terrible years after the discectomy and then with Therapeutic Massage and a splint designed for a person with my post-surgical problems, I am doing well.( 27 years after being diagnosed with TMJ)
There are many people who have not done well with disectomies. Many post on this forum.

I hope this helps. It's my opinion the cartilage grafts are just a temporary fix for most people and do not last. Many surgeons don't do them anymore. Some do.

If the disc are torn, perforated, dislocated and are causing constant and awful pain, getting them out is the procedure being done by many surgeons.

There is no easy way and no guarantees with any of the TMJ surgeries.
Also, it might help you make a decision if you read a standard consent form for these surgeries. There can be many complications and risks and they do happen.
There's one posted here. Use the search feature and search "Consent Forms".
I wish I could give you something more positive, but this is how it went for me.

Cymy Sue

 
Old 12-18-2004, 02:32 PM   #8
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meditation HB User
Re: Open Joint Surgery for Perforated, Displaced Disc

I read your post last night. and, I wanted to respond..but, just wasn't doing well.

Anyway, I hope a little bit of what I went through helps you.

Research the surgery your doctor wants performed. Be careful.
I have had 12 bilateral procedures on my jaw. The last two were open joint procedures. The first open joint procedure was a big mistake. The doctor decided my discs were beyond repair. So, he took them out. He took out my synovial sacs..because he felt they were destroyed. He put temporary silastic implants in their place. The pain only worsened with this procedure. There was no lubricant (synovial fluid). My condyles perforated through the implants. I was bone on bone. It hurt like ****. He didn't want to believe the pain or my complaints. I constantly went to the hospital because of the pain. I was even in the hospital for my prom weekend, on a Morphine PCA pump.

If you have the procedure, make sure you read and understand the consent forms..there will be a lot of things on it.

I was very fortunate the last open joint procedure worked. My current doctor performed it. He took out ear cartilige for discs. And, the past 11 years have been amazing.

Only, I bit down on a screw. Now, I am facing the possibility of a total joint replacement. You and I are similar in age. Be careful. I truly understand the pain you are feeling, just make sure you are fully aware of the risks and consequences of the surgery.

I apologize if this seemed to upset or confuse you. That is not my intent. I just want everyone out there considering surgery to be aware...

Take care,
Johnna

If y

 
Old 12-18-2004, 02:50 PM   #9
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lawya_bunny HB User
Re: Open Joint Surgery for Perforated, Displaced Disc

Oldpal, I can open my mouth as wide as I want without any pain in my joint. And it never locks.

Last edited by lawya_bunny; 12-18-2004 at 02:51 PM.

 
Old 12-19-2004, 12:51 PM   #10
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buffster HB User
Re: Open Joint Surgery for Perforated, Displaced Disc

I think it is wrong for us to say DON'T DO IT almost everyone who says it has had surgery bottom line is surgery is NOT a guarantee no MATTER what kind you have even if you get your tonsils and adenoids removed you can still have future problems the decision HAS to be totally up to you. I understand your pain level is a 2-3 but is that constant? cause living in pain is no fun and when medical science offers us hope some of us take it. I personally am about to have the metal implant placed over bone this is after a failed cartilage procedure i have no disc in right side however when DR removed my disc it was in tiny peices.The decision is YOURS and YOURS only I'm not saying run out and do it because once its done you cant go back but i had 2 GREAT pain free years after my first and hoping i will get at least that out of next procedure

Take care
Happy Holidays
Buff

 
Old 12-19-2004, 05:38 PM   #11
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oldpal HB User
Re: Open Joint Surgery for Perforated, Displaced Disc

Quote:
Originally Posted by lawya_bunny
Oldpal, I can open my mouth as wide as I want without any pain in my joint. And it never locks.
Hello bunny,
I'm guessing you don't have constant headaches do you? If you don't have constant severe headaches, which is caused my the condyle sitting too back back of the joint and hitting all the blood vessels back there, then you absolutely DON'T NEED IT (the surgery).
Surgery will make it worse.

Take care,
oldpal

 
Old 12-20-2004, 09:14 AM   #12
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lawya_bunny HB User
Re: Open Joint Surgery for Perforated, Displaced Disc

Yes, I do have constant headaches. They're not debilitating, but I am in constant low-grade pain from the headaches, as well as sore jaw, face, and head muscles. I'm not getting the surgery to reduce the pain, per se, but to correct the degenerative condition of the joint (i.e.,. the perforated and discplaced disc). What I am really afraid of is the bone beginning to dissolve if I do nothing. Should I just wait until that happens and in the meantime learn to cope with the unrelenting headaches and sore muscles? I wish this were an easy question!

Also, does this happen to anyone else here? Sometimes, when I haven't eaten or chewed anything for a few hours, the first bite of food I take causes a sharp, burning sensation in my jaw muscles for a few seconds. It feels exactly like the lactic acid burn in your muscles when you have exhausted them. Anyone?

Thanks for listening.

 
Old 12-20-2004, 11:23 PM   #13
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oldpal HB User
Re: Open Joint Surgery for Perforated, Displaced Disc

Hello,
I know what you're worrying about. I'm not sure if the bone will dissolve, but what i've seen in the literature is that the bone will actually bent like a hook. What you can do is simply wear a splint like the MORA, which will put pressure off the joint and provide space for the joint.
The surgery will not accomplish anything in my opinion. The question is why the disc is displaced in the first place. The answer is that he tm joint is not in the right place which caused the disc to be in the wrong place. Put the joint in the right place, the disc will return to its normal position. Not the other way around.


Take care,
oldpal

 
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