I've been doing a lot of research on Sudden Onset Closed Lock, since waking up with a limited opening of approx. 22mm almost 3 months ago. (MRI says left anterior displaced disc with no reduction). One day after I had my lock, I was able to unlock myself by trying very hard to open my mouth wide. Once I got it opening, I was fine and normal for the rest of the day. But I woke up again the next a.m. locked again and has been that way ever since. I don't have any pain to speak of, and no muscles problems - strictly a joint thing.
I read lots of favorable reports on Arthrocentesis, by Googling. They seem to be legitmate, peer reviewed studies, although I don't know how scientific and unbiased they really are.
I've scanned this board for Arthrocentesis for closed locks, and found mostly very poor results with people wishing they had never had it done, and reports of it even worsening their cases.
Because of this, I've pretty well decided against arthrocentesis. But I have the option of a less drastic type of treatment - where my dentist will inject the joint space with anesthetic (increases the joint space), and then an oral surgeon will briefly put me to sleep, and try to manipulate my jaw to get me out of this lock.
I'm not sure if I should take this chance. If we get unlocked, we'd immediately put in an anterior repositioning device, to prevent locking up again. I'd like to give myself a chance to get unlocked, before it's too late. On the other hand, I don't want to make myself worse. (common dilemma with tmjd's)
I know only I can decide what to do, but are there any comments out there? My appointment for this procedure is next week. I have worn a pivot splint for 2 weeks, and an anterior reposition splint for 2 weeks. Have had my tm joint frozen 2x, with light mandibular manipulation by the dentist, to no avail. (well maybe a couple mm increase)
I guess my other option is to do nothing further, and apparently this type of thing deteriorates about 7% per year, and so I'll be in real trouble within about 10 years. Or maybe longer if I really baby my jaw....
06-16-2006, 06:47 PM
Are there any downsides or risks to this? Is it reversible? Is the anterior repositioning device removable? Have either of them said there is any risk of worsening the condition if they do this? The only thing I can recall similar to this is from a post a while ago from someone whose dentist tried to manually manipulate their jaw with poor results - I believe a ligament was torn or strained in the process and their jaw became misaligned. But your proecedure sounds like it is much more exact in how it is being done. How does the oral surgeon know the jaw has become unlocked - by xrays?
06-16-2006, 07:34 PM
I believe I've spoken to you before. I also have a closed lock.. no pain yet really..basically my biggest problem is jaw locked..it just wont open..woke up one day.. with very limited opening..and its been like that every since. The doc i'm working with hoped that my joint would open after 2 months of splint treatment 24/7 horseshoe lower splint. I'm wondering why you're only doing it for 4 weeks. I think you should give it more time maybe. Im desperate myself. My jaw still hasnt opened , and the tmj doc wants me to see a physical therapist b/c he thinks my trapezoid muscles might be interfering with my joint opening up..( I do have head forward posture) and some posture issues I guess..do you have this? Let me know please how this works out if you do decide to go through with this. I was also recommended arthrocentesis, but I read so much bad stuff about that. The oral sx was really pushing me to get that. He said that would open me right up...but he was an insensitive jerk off..so I opted out of that really quick..he just wanted to shoot me up and finish..but that doesnt fix the true issue..the issue is that our muscles, jaw, and teeth are all working together as one..even our spine is involved. My doc told me..truly..your mouth is the end of ur spine as they are all connected. That was interesting. Its an issue that it has to be repositioned so to speak..arthrocentesis..just cant do that..so I'm really down lately.. wondering if my tmjs will ever unlock..anyways..let me know..keep me posted..our problem sounds very similar.
06-16-2006, 08:08 PM
If the manipulation is successful, the opening will go immediately to normal (45-55mm). If the opening goes to about 30-40mm, then you are just pushing the anteriorly displaced disc more and more forward, so there is more slope in the joint. This is what I have been told by one well known tmj surgeon. There could be risks, of course. Even a needle in the tm joint space could be risky. And the manipulation - it could be very simple, or it also could be risky. There's just not much data about it, that I can find.
What I have found with manipulation is that if it is done quickly (within 1-2 days) and if you are young (which I am not), it is more successful.
Yes, we seem quite similar. I hope your pt goes well if/when you try it! I'll keep you posted. I just may very well chicken out and not do anything further. I think if something like this could be successful, someone somwhere surely would have posted about this simple type of success.
Have to keep remembering it is a blessing not to be in pain for now!
Thank you both!
06-16-2006, 10:59 PM
I hope you know why you are locked because that's the key to figuring out how to unlock it.
Are you still locked with the splint on? And do you know how much joint space you have with the splint? The second question is the most important because it will show you if the splint you have is pulling your jaw down and forward or not.
To be honest, i don't think this manipulation thing will work.
06-17-2006, 04:36 AM
Hi Sylvi, unfortunately, I have to agree with Good Things. My *excellent* specialist at UCLA told me that the techniques used to move discs usually aren't good for long-term results. Many times, even when discs are SUTURED in surgery, they will slip again. I know this is grim...but I believe it is probably true, especially for those who are bruxers. My best friend was in a car accident and had arthroscopic surgery...it actually worked for her, BUT she is not a clencher. Many people who develop TMJ problems without blunt trauma are often clenchers/grinders. Therefore, when you move the discs during a surgery or other procedure, there is a high chance of them slipping again later if the patient is a bruxer:(
I don't mean to be all depressing...I'm sure these procedures do work for some people, or they would never be done at all! but, if you don't have pain...it's a gamble. A big one. Do you function normally otherwise, i.e. chewing, talking, etc? Also, I agree with laskalady...you probably should be trying more conservative treatments first.
I did read a study that I may have bookmarked on my other computer...it was a Japanese study done over 10 years that included people with closed locks. They compared those who had treatment (can't remember what kind, sorry!) and those who had NO treatment at all. Ten years later, those who had no treatment were not any worse off, and most were opening normally. Somehow, their jaws "accommodated" themselves. Several TMJ specialists have told me that this is fairly common--and some people even develop a "pseudodisc" that functions just fine. I don't know if it necessarily takes ten years to get better--I doubt that!--but even if it's only a few years, many people are afraid to wait it out. I understand that might be scary, and uncomfortable...just waiting it out...but you may be better off just trying conservative treatments and waiting. I will see if I can find that study tomorrow.
Good luck to you...
06-17-2006, 12:37 PM
Hi GT and Maggie Mae,
Thank you both for your honest input. Don't worry about scaring or depressing me - been through all those emotions, and am just trying to make an intelligent decision here. My tmj specialist will help me with the final decision - he is wonderful, conservative, and wouldn't hurt me for the world. He wants to help me.
I've read many times where manipulation can work - heck, I did it myself once on day 2. People are unlocking themselves all the time, in early stages. But, at three months into a lock, it just may be too late. Strange, I never went through the clicking stage - just went straight to lock.
GT - I am locked because my disc is anteriorly displaced, without reduction, and the jaw can't get past it. Who knows, maybe by now it has adhesions, and is stuck to the fossa - that happens. But this does not show up on MRI. (whether it is stuck or not) Or maybe the ligaments are damaged. Nobody has told me that from the MRI either.
I read, according to Piper's Classification, that I am probably stage IIIa or IIIb. Not suffering much pain, because the disc is just laterally detached, not medially, and compression on the medial part doesn't hurt. The pain will come if/when the disease progresses, and the disc also becomes medially detached. (eg Pipers stages iv and v) (this is all my own self-diagnosis, and theories, so take it with a grain of salt)
I am not a clencher or a grinder. Never have been. My jaw always feels relaxed. That's why I think the splints aren't doing anything for me. Even though it pulls my jaw down & forward a bit, it can only go down so far, as the disc is in the way.
Yes, I read that Japanese study. The improvements seem to be that the disc just gets pushed more and more forward anteriorly. That would be quite an acceptable outcome, I agree, if it just stablized that way.
I don't want to discourage anyone, because I'm only a patient, but I've been told that anterior repositioning devices will never recapture a non reducing displaced disc (internal derangement). Now, for muscle problems, or for reducing displaced discs, that seems to be a different story, and they seem to be quite successful in providing relief for many with those types of problems.
I'm thinking that if manipulation can "unstick" or unlock the disc, THEN, we can use the anterior repositioning device for a few months, then go to phase II. But unless we can get the disc unstuck, I don't see any point in going on with the splint - may as well just go for non-treatment, and hope of a gradual adaptation like the Japanese study indicated. That way, I don't have to worry about my bite changing.
Please, everyone, don't take too much stock in what I say, if you come along after me and are looking for answers. These are just my thoughts, for my situation. I think it's good to get out thoughts for discussion. I realize I could be way off base.
I hope someday things will be clearer for all of us!!!
Thanks again for your help! I will let you know what I decided for next week.
06-17-2006, 02:20 PM
I think I've just recently read an article that said anterior repositioning devices can recapture a non reducing displaced disc but I could of misreadit.
Does your jaw click or do you have a history of your jaw clicking?
06-17-2006, 04:02 PM
I am just confused about one thing...are these repositioning devices really effective LONG TERM? I mean, I was told by several TMJ docs that even surgical procedures often fail long-term...in other words, the disc slips even when it's sutured into place. Also, I was told the same thing about repositioning devices...that the disc may be in a favorable position for awhile, but most likely the results won't last forever. I am not saying this is the absolute truth...this is just what I was told. I have also read that in different sources as well. Do you have any thoughts about that...
06-18-2006, 04:20 AM
From what I've read if a disc is recaptured and the device is removed there is a much better chance of long term stability if the bite is altered to act like the splint. Once the repositioning device is removed the bite and jaw would probably return to the prior position if not. From what my new tmj dr. told me is after the repositioning device probably I will need a new denture to act more like the splint. I have no clicking an he thinks my disc is displaced anteriorally. I get an MRI Tues.
06-18-2006, 06:21 PM
Hi MaggieMay & LTC,
I'll give you my thoughts, from what I've read, but please understand I had never even heard of tmj before my sudden onset closed lock 3 months ago. So this is a very complex topic, and I am no authority!!
LTC, no, I never clicked before this happened, at all. I understand that many people DO go through the clicking phase for awhile, first. I think anterior repositioning splints work best in this phase, to prevent going to the locking phase. I have never read where an ARA (anterior repositioning applicance) has ever recaptured a non-reducing, displaced disc. I've read where they can recapture a reducing displaced disc, though.
MaggieMay, I've heard there are specialists out there who can unlock some people, then gives them an ARA for 4 months or so, then they must wear braces forever after that. Otherwise, you would just get locked again, I think.
If that is the case, I guess one would have to decide whether they will keep their own bite, if it's functioning OK, and just live with the closed lock, if it's not too bad, and hope it stretches out a bit, and doesn't progress in deterioration of soft tissue or bone. Or, try to get unlocked, get the ARA, and get braces or orthodontic work. So I guess that is basically what you both just said.
Anyway, there's always exceptions to everything. There's probably cases of people getting well without too much help, and people not getting well with everything tried. It's all very confusing, but we can be thankful that at least it's not life threatening! And doctors are getting more and more educated about this all the time.
Hope I didn't confuse things even more with my opinions.
06-20-2006, 06:40 PM
If its not a bother, do you mind me asking you your age. I'm doing research on this matter, and I'm also very perplexed regarding why my joints were displaced all of a sudden. Again, like yourself, I never had any jaw issues..just woke up one day with my jaw feeling wierd...then the next day..it clicked..and the next day it locked. I'm trying to make sense of how this just happens..although Im told its a thing where you just dont realize you're damaging ur joint until it just happens. Its really perplexing. My doc said the younger you are the better ur chances of recapturing your disc. What do you mean when you mention non reducing or reducing discs...im confused. Also ive noted that most ppl with head forward posture get locked a lot.
06-20-2006, 07:51 PM
I have closed lock too, and after doing extensive research I am scheduled for arthroscopy with Dr. Tarro of MA.
I personally decided to do this because he claims a 97% success rate, has specialized in TMJ for years, wrote one of the books on it, etc.
He uses temporary sutures, and then the jaw is said to restabilize.
I would choose this option over messing around with fluids, because it sounds just like arthrocentesis. I would want someone highly skilled to have direct visualization rather than blind manipulation. That way I have the best of both worlds, manipulation and an idea of how things look in there.
That's my two cents.
06-23-2006, 02:52 PM
I'm just over 50.:) My OMS Surgeon that I saw recently said that without a doubt, mine is cause by the long, open mouth sessions with a gum surgeon a few weeks before I woke up locked. Good luck with the research.
Good luck with your surgery!! How long have you been locked, and do you have any pain? How wide is your ROM, and what brought yours on? What you say about the arthrocentesis makes sense. Sounds like a wonderful doc!
Well, I had my manipulation today (they didn't do the jaw joint freezing after all), put me to sleep (or at least I have no memory of it - I think they call this twilight), and they say they got me to 50mm, and left me pried open like that for 15 minutes, but after they took out the "block", I went right back to my regular size almost immediately - 27 or so. Disappointing, but I'm glad that it is over now, I don't seem to be any worse off (that was a worry), and now I'll just carry on with life, counting all my other blessings.
I have been totally immersed with tmj studies, research, worrying, etc. etc for exactly 3 months now, and I need a break.
Good luck to you all, and thanks for the help!
06-23-2006, 04:56 PM
I am sorry to hear the manipulation didn't work :( However, I do agree that it might be best for you to take a break now from worrying. I know how all the research and "what if's" can just drive a person crazy.
Now I understand where your joint problem came from...the dental work. It is the same story for me too, sadly. The oral surgeon kept my mouth wide open for 2.5 hours, with only about a 5 minute break when I went to use the restroom. He also used a lot of force while my mouth was wide open, trying to pry 4 deeply impacted wisdom teeth out of the bone. How stupid. I was told by other oral surgeons that removal of wisdom teeth should NEVER take that long, and if it does, the surgeon is supposed to stop the procedure because it can harm the patient--just like it did to me.
I still have not totally accepted this, especially because I have been harmed by other surgeons. I had a defective metal rod placed in my leg after I broke it, and then the rod fused to my bone and could not be taken out. One surgeon accidentally broke my hip trying to take it out. Then 12 years later, I finally found a surgeon that got it out, but he had to break my leg AGAIN in order to remove the rod. Long story, but you get the idea. Yes, the best thing we can do is try to count our other blessings. I am not trying to make light of your situation--a closed lock is not easy to live with--but do be thankful that you aren't in a lot of pain. I wish you the best, and hope your jaw will accommodate itself after awhile.
Good luck and take care,
06-24-2006, 05:44 AM
I have also been locked for 2 1/2 months. I have been doing the splint therapy for almost a month. I have improved from 22cm to 27cm. But the doc is now thinking that he should a.) either manipulate the joint back into place or b.) I would need to get arthoscopic surgery; neither of which sound fun. He says I should try the manipulation first and he has had great success with this techinique over the years but thinks I would also be happy with the surgery. I know someone who has been very happy since they had the surgery six months ago.
The doctor told me that if I didn't choose anything and just left it alone the "joint" could deteriorate; if I ever needed dental work done I wouldn't be able to get it or if I ever needed serious medical surgery or a tube down my throat for survival the doctors wouldn't be able to save me. Nice, huh? A little threatening, but I guess it could be true. This whole ordeal has been so frustrating and emotianal, which probably adds to the situation. I have a month to decide what to do- does that seem weird that he is making me wait so long?? Does anybody have any success stories???
06-24-2006, 11:53 AM
I tried the manipulation, knowing that it might not work, and knowing that it could hurt me further. I know it can work sometimes, but usually it works with younger people, and when it is done within 24-48 hours after the lock first appears.
The manipulation did not work for me. It think it could have worsened my situation, although I reserve judgment on that. Once he got me open to 50 mm, he put a rubber jack in my mouth and left it there for 10-15 mins. (I did not consent to that part of it).
I did not sleep last night - I sleep on my back, and every time I went to fall asleep, my jaw fell back and cut my air off, and I awoke with a start. Also, my jaw muscles spasmed, closing my mouth quickly & banging my teeth. These things never happended to me before the manipulation. I'm hoping it's just an after effect from all the trauma.
But for me - I wish I had not done the manipulation. It was too risky for the slim chance I had of becoming unlocked.
I've heard (from a reputable surgeon) that arthroscopic surgery can have complications, Dani.
If you are not in pain, I'd learn to live with the closed lock. Maybe in 5 years, they'll have better surgery, but right now, the surgeries are not successful, from what I've heard, and need to be repeated.
Dental work can be done if you are at 27mm & get a little bigger. Intubation can be done through your nose for airway.
Sorry that I don't have better news for you, and maybe you will get different advice and I wish you all the luck in the world.
For me, I'm going to keep the rest of me as healthy as I can without doing anything more with my joint.
Thanks for your kind words, and I'm so sorry for all the pain, sorrow & stress you've been subjected to. It's just not fair. But you've kept your kindness in your soul, and I wish you all the best, too.
06-24-2006, 03:32 PM
Thanks for your advice and information. I really think I am leaning towards getting a second opinion. The weekly therapy (ultrasound and electro galvanic stimulation) has helped a great deal with the pain. I have not had a headache or serious pain in almost 2 weeks. I really don't want to get the manipulation or the surgery done. I just want to wait and see what happens. I can eat most foods if I cut them and as long as I don't bite into anything. I can live with having to cut everything into small pieces. Thanks again, and I hope you feel better soon!
06-24-2006, 06:50 PM
I have also been locked for 2 1/2 months. I have been doing the splint therapy for almost a month. I have improved from 22cm to 27cm.
I am wondering, if he can you get open 5 cm's, why can you help you open more?
06-24-2006, 08:55 PM
I'd be really careful before considering any manipulation or surgery. I agree with Sylvi--it is all just very risky. After time, your jaw might accommodate itself...you might not open all the way, but hopefully could see some improvement. I am not sure what to tell you...but all that information about how the joint will deteriorate, you can't ever be intubated, etc...I don't know, sounds like someone is trying to scare you a lot. sure, these things could be true...but worrying about all the "what if's" just may not be a good idea right now.
If you do decide to have surgery...make sure to find the most qualified surgeon out there. I'm sure you already know all this, but I have had many horrifying surgical experiences and can't say it enough...researching a surgeon's credentials is an absolute MUST...it would also be great if you knew of some former patients that had good results from whatever surgeon you're considering. Anyway, good luck to you. Hang in there and let us know what you decide to do, or if you decide to live with it for awhile.
06-24-2006, 11:16 PM
I read one of your earlier posts about the Piper Classification system, and I just wanted to say something about that. I had an MRI, and was supposedly a Stage IIIb on my left side, Stage IVb on the right...yet, my discs are still reducing and I can open to 46mm. Hmmm...anyway, this is what the radiologist report said, and what the oral surgeon told me. When I went to a regular TMJ specialist (NOT a surgeon), he told me that the Piper system is not all that great. In many cases, surgeons tell people "You have a Stage IV, you need surgery!"...it sounds scary, and the patient often jumps into having the surgery done. However, does it really mean much? That specialist, and one other that I saw, both said the same thing...it's not all that helpful and often just scares people when they are told they're in a late stage. The most important things are how you FEEL and FUNCTION. If you don't have much pain, and have a decent level of function...then it doesn't really matter at that point what an MRI or classification system says. you could have arthritis on both sides, but if you had tolerable pain levels and functioned at an acceptable level, then who cares...so for now, I'd just forget about the Piper system. I hope your function will eventually improve on its own, try to stay positive! :)