laskalady
08-26-2006, 12:59 PM
Well I've been in this tmjd situation for almost a year now...coming up on my anniversary in September :-0) and I'm still with a closed lock. The tmj doc I have is very nice...and hes had me use a 24/7 horseshoe splint for about 4 mos. now. He was hoping I'd start clicking and could go to phase 2 braces. He said my case is difficult, and hes consulted with many professionals about me..even from other parts of the world. HE says they recommended something called Lavage?? Im going to try to look it up.. This is a process where they remove the scar tissue..and usually it will go back in place. They say its given them lots of success. However, I have noticed my opening is much wider than before. I can actually put 3 fingers in..but its a very tight squeeze. What are the odds of me clicking again?? I realy dont want this surgery. My tmj doc is hoping it will start opening up..I'm even seeing a physical therapist about 2 times a week.
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raylp
08-26-2006, 02:01 PM
Lysis and lavage is arthocentesis. It's done as an in-clinic procedure in which they fill up the joints with a solution and free things up. It is a blind procedure, in which they can't see inside the joint. Some arthocentesis procedures add the removal of scar tissue or using other tools to move the disc around.
I had it done for closed lock and it didn't help. I went to arthroscopy.
What concerns me about your TMJ doc is that it sounds like it took alot of investigation to come up with something that is a standard treatment for closed lock, once the conservative treatments have been exhausted. With my bias that I would only get treated by highly skilled folks, that may be a red flag.
Having a closed lock that does not respond to conservative treatments is not unusual. I don't know why he had to go all over the world for direction as to the next steps.
The success rates from studies have been high, but I know of many who didn't have success from this, and know of highly skilled surgeons who question it's effectiveness. They advocate arthroscopy, because of the ability to have visualization of the joint.
The doc I went to, Dr. Tarro, who I consider one of the top surgeons, does it as a next step after conservative treatments. If that doesn't work, he has them in for an arthroscopy. From what I gathered, it's commonplace for their clinic to move on from conservative treatments within 6-8 weeks. The doctor had an attitude that it just makes sense to take care of the patient and get the joint operational again without dragging things out.
This attitude was good for me.
I am pro-surgery by the way, that's my bias, but only with highly skilled surgeons with great references, success rates, and high levels of experience.
I wouldn't take any risks with anything less.
So I would research the avenue your doctor is recommending by having an intial consult with the surgeon, and asking alot of questions. You can postpone your decision until you are certain of what you want to do.
If your insurance would cover out of area procedures, I highly recommend Dr. Tarro in the Boston area. He made me feel completely comfortable, and I am not easily satisfied. He quotes a 90+% success rate, so given that, I'd think there is an excellent chance of having things in better shape.
I had it done for closed lock and it didn't help. I went to arthroscopy.
What concerns me about your TMJ doc is that it sounds like it took alot of investigation to come up with something that is a standard treatment for closed lock, once the conservative treatments have been exhausted. With my bias that I would only get treated by highly skilled folks, that may be a red flag.
Having a closed lock that does not respond to conservative treatments is not unusual. I don't know why he had to go all over the world for direction as to the next steps.
The success rates from studies have been high, but I know of many who didn't have success from this, and know of highly skilled surgeons who question it's effectiveness. They advocate arthroscopy, because of the ability to have visualization of the joint.
The doc I went to, Dr. Tarro, who I consider one of the top surgeons, does it as a next step after conservative treatments. If that doesn't work, he has them in for an arthroscopy. From what I gathered, it's commonplace for their clinic to move on from conservative treatments within 6-8 weeks. The doctor had an attitude that it just makes sense to take care of the patient and get the joint operational again without dragging things out.
This attitude was good for me.
I am pro-surgery by the way, that's my bias, but only with highly skilled surgeons with great references, success rates, and high levels of experience.
I wouldn't take any risks with anything less.
So I would research the avenue your doctor is recommending by having an intial consult with the surgeon, and asking alot of questions. You can postpone your decision until you are certain of what you want to do.
If your insurance would cover out of area procedures, I highly recommend Dr. Tarro in the Boston area. He made me feel completely comfortable, and I am not easily satisfied. He quotes a 90+% success rate, so given that, I'd think there is an excellent chance of having things in better shape.
laskalady
08-26-2006, 04:15 PM
Well, the things make sense. I think the doc was hoping ohter professionals would perhaps give him more ideas for conservative therapy in a severe case. I think its b/c he is anti-surgery. He got hurt from a surgery and since then has tried only to use conservative measures. I'm really not looking forward to this surgery if I do have to get it. So you think my odds are really low of recovering the disc back to normal position w/o surgery?
raylp
08-26-2006, 05:07 PM
I'm not sure about your odds with non-surgical measures. I didn't go the route of splint therapies, so I know very little about them. I do think though, that if you don't have some degenerative issues in the joint, the odds are pretty high that a highly skilled surgeon could help alot.
After being exposed to so much anti-surgery sentiment here, I was nervous about surgery, even though the surgeon had such a great track record. I think what helped me alot was his no-nonsense style, and attitude that this was pretty common. It really helped me to be treated as if it was nothing unusual. Anyway, I was extremely surprised at how easily I recovered. Sure everyone there told me this, but having such deep concerns about surgery I still wasn't convinced.
After being exposed to so much anti-surgery sentiment here, I was nervous about surgery, even though the surgeon had such a great track record. I think what helped me alot was his no-nonsense style, and attitude that this was pretty common. It really helped me to be treated as if it was nothing unusual. Anyway, I was extremely surprised at how easily I recovered. Sure everyone there told me this, but having such deep concerns about surgery I still wasn't convinced.
GoodThings
08-26-2006, 07:57 PM
Well, the things make sense. I think the doc was hoping ohter professionals would perhaps give him more ideas for conservative therapy in a severe case. I think its b/c he is anti-surgery. He got hurt from a surgery and since then has tried only to use conservative measures. I'm really not looking forward to this surgery if I do have to get it. So you think my odds are really low of recovering the disc back to normal position w/o surgery?
My question for you is: do you where your joints are relative to the fossa as of now with the splint in? If you still have a closed lock, your disc is still anteriorly displaced. Meaning that, your joint is still sitting back there.
GT
My question for you is: do you where your joints are relative to the fossa as of now with the splint in? If you still have a closed lock, your disc is still anteriorly displaced. Meaning that, your joint is still sitting back there.
GT
laskalady
08-27-2006, 03:29 AM
My question for you is: do you where your joints are relative to the fossa as of now with the splint in? If you still have a closed lock, your disc is still anteriorly displaced. Meaning that, your joint is still sitting back there.
GT
Good Things,
How do I know this information? I'm not as advanced in this matter as I should be perhaps. I do believe I heard the doctor saying that I am still anteriorly displaced, but my opening is much better than before. What do you think? Do you think its hopeless w/o surgery??
GT
Good Things,
How do I know this information? I'm not as advanced in this matter as I should be perhaps. I do believe I heard the doctor saying that I am still anteriorly displaced, but my opening is much better than before. What do you think? Do you think its hopeless w/o surgery??
GoodThings
08-27-2006, 03:26 PM
Good Things,
How do I know this information? I'm not as advanced in this matter as I should be perhaps. I do believe I heard the doctor saying that I am still anteriorly displaced, but my opening is much better than before. What do you think? Do you think its hopeless w/o surgery??
You can always get a tomogram to check where your joints are. Ask your dentist for one.
In my opinion, surgery won't help you at all. Maybe for a little while anyway. Say that the surgery returns your disc so that it sits on top of the condyle and now you can have a wide opening. But your joint is still sitting back there with the disc sitting on top of it. Your joint and disc aren't suppose to be back there, and i believe overtime, the disc will be anteriorly displaced again.
The problem isn't the disc, although that's the reason you're closed lock. The real problem is the joint. You really have to move the joint down and forward so that it's give enough room for the disc to go back.
GT
How do I know this information? I'm not as advanced in this matter as I should be perhaps. I do believe I heard the doctor saying that I am still anteriorly displaced, but my opening is much better than before. What do you think? Do you think its hopeless w/o surgery??
You can always get a tomogram to check where your joints are. Ask your dentist for one.
In my opinion, surgery won't help you at all. Maybe for a little while anyway. Say that the surgery returns your disc so that it sits on top of the condyle and now you can have a wide opening. But your joint is still sitting back there with the disc sitting on top of it. Your joint and disc aren't suppose to be back there, and i believe overtime, the disc will be anteriorly displaced again.
The problem isn't the disc, although that's the reason you're closed lock. The real problem is the joint. You really have to move the joint down and forward so that it's give enough room for the disc to go back.
GT
MaggieMay78
09-03-2006, 03:00 PM
Why are they recommending surgery if you can get three fingers in your mouth? A three-finger opening is considered "normal." Sure, it may not be as wide as you were before, and I am in the same exact situation. I open to just a teensy bit more than 3 fingers...and my opening continues to increase gradually. And yes, my discs are displaced, on both sides!
I saw an *excellent* TMJ doctor at UCLA, and he agreed with 3 other specialists that i saw...but he just explained it the most clearly: There is often WAY too much emphasis on the position of the discs, condyles, etc...Many, many times, the majority of people's pain is coming from the muscles that have tensed up to protect the joints. Some people think that moving the discs around in surgery will take away the muscle pain, but that is not necessarily true. *And, several docs have told me that in many cases, the jaw naturally adapts and accommodates the changes in disc position.*
Also, I was told that most surgeons' definition of a "successful" surgery means that the patient can open to 35 millimeters afterward. Do they typically take your pain levels into consideration as a criterion for success? No, many do not! In other words, if you can open to 35mm after a surgery, but are still in PAIN...well, many times they will just say there isn't much more they can do. They do surgeries to improve FUNCTION...and if you can already put 3 fingers into your mouth, then at this point the risks of surgery may far outweigh the benefits. You are most likely opening 35 millimeters or more at this point, unless you have REALLY small fingers!!!
I am not trying to be depressing...I am just saying that surgery is not always a fix for the pain that goes along with TMJ, and it seems that your function is not all that bad. Also, what was recommended to you was an arthrocentesis...like others said on here, that probably would not help much long-term. In an arthrocentesis, the surgeon cannot even visualize the joint.
I am certainly not declaring myself an expert here...but I have done a LOT of research, been on numerous message boards for the past 6 months, and seen 5 specialists. What I have learned is that before considering surgery, these are just a few questions you should ask yourself:
1) Can I chew pretty well, and eat a fairly normal diet? ("fairly normal" as in you can eat most things without problems...you may have to do without tough breads, chewy steaks, nuts, and gum! Which in my opinion is no big deal, if I can still avoid surgery!)
2) Can I open enough to eat, brush/floss my teeth, and have regular dental cleanings?
3) Have I exhausted all of the conservative treatments out there that may help me?
This is not meant to be an all-inclusive list of things to consider...but seriously, surgery is usually about improving FUNCTION...and if you can open to three fingers, I would seriously question whether you need arthrocentesis or surgery of any kind right now. I would recommend finding yourself a new conservative TMJ specialist, and taking it from there. If you have a major university near you, you may want to search there for a good specialist. Good luck! :)
Meg
I saw an *excellent* TMJ doctor at UCLA, and he agreed with 3 other specialists that i saw...but he just explained it the most clearly: There is often WAY too much emphasis on the position of the discs, condyles, etc...Many, many times, the majority of people's pain is coming from the muscles that have tensed up to protect the joints. Some people think that moving the discs around in surgery will take away the muscle pain, but that is not necessarily true. *And, several docs have told me that in many cases, the jaw naturally adapts and accommodates the changes in disc position.*
Also, I was told that most surgeons' definition of a "successful" surgery means that the patient can open to 35 millimeters afterward. Do they typically take your pain levels into consideration as a criterion for success? No, many do not! In other words, if you can open to 35mm after a surgery, but are still in PAIN...well, many times they will just say there isn't much more they can do. They do surgeries to improve FUNCTION...and if you can already put 3 fingers into your mouth, then at this point the risks of surgery may far outweigh the benefits. You are most likely opening 35 millimeters or more at this point, unless you have REALLY small fingers!!!
I am not trying to be depressing...I am just saying that surgery is not always a fix for the pain that goes along with TMJ, and it seems that your function is not all that bad. Also, what was recommended to you was an arthrocentesis...like others said on here, that probably would not help much long-term. In an arthrocentesis, the surgeon cannot even visualize the joint.
I am certainly not declaring myself an expert here...but I have done a LOT of research, been on numerous message boards for the past 6 months, and seen 5 specialists. What I have learned is that before considering surgery, these are just a few questions you should ask yourself:
1) Can I chew pretty well, and eat a fairly normal diet? ("fairly normal" as in you can eat most things without problems...you may have to do without tough breads, chewy steaks, nuts, and gum! Which in my opinion is no big deal, if I can still avoid surgery!)
2) Can I open enough to eat, brush/floss my teeth, and have regular dental cleanings?
3) Have I exhausted all of the conservative treatments out there that may help me?
This is not meant to be an all-inclusive list of things to consider...but seriously, surgery is usually about improving FUNCTION...and if you can open to three fingers, I would seriously question whether you need arthrocentesis or surgery of any kind right now. I would recommend finding yourself a new conservative TMJ specialist, and taking it from there. If you have a major university near you, you may want to search there for a good specialist. Good luck! :)
Meg
laskalady
09-06-2006, 09:54 PM
Maggie May,
Thanks so much for your response! I remember your name, and you've been of help to me in the past. I appreciate your balanced, and logical point of view. I believe my TMJ dentist is a good one, and kind person. Perhaps he did give up a little on me. However, I m with you on the funcionality issue. My jaws don't open all the way up, but you know I've had a lot of success with just splint therapy compared to when I first went in. Even my tmj doc said that, and stopped speaking of the surgery after he did another muscle movement test..its the machine where they measure from side to side and up and down..not sure of the name. My fingers are skinny, that I admit, but my physical therapist said its a bit over 30mm opening. I can eat most things, brush/flossing is okay, and the thing i'm most glad about is my pain level is very low, and doesnt occur often at this moment. For that I'm very thankful. I believe its like your doctor said...surgery will help with the disc getting back on track but what about the results? I have pretty much concluded that I will continue this way, and just try to continue to use conservative measures, messages, splint, whatever I have to do to keep this stable. Hopefully in the future my jaw gets back on track, but if not..i don't want to risk having a foiled surgery. If you can recommend a good doctor to me, I am close to UCLA. I live in California. I saw one doc near there who I didn't like. He was not very sensitve. Thanks again 4 your input! Makes a lot of sense.
Also, what do you (or anyone) think about braces? The doctor recommended getting braces on after my jaw was relocated, however, I'm not sure that day will come soon. My tooth at the bottom has become turned in so to say from wearing the splint, and also I have a wisdom growing in in the back of my mouth which has caused one of my front teeth to move back behind the other front tooth. I really want braces!, but with my jaw dislocated i'm not sure its the best thing...I guess my question is... or my questions are 1. Can I get braces even though my jaw is dislocated , just to straighten up my teeth w/o compromising or worsening my discs? and 2. What if the regular dentist insists on taking out my wisdom tooth, should I let him even tho my tmj doc doesnt want him to as he says it might interfere with my progress? What do you guys think ? I mean i guess its more of a cosmetic concern for now until I go to the reg dentist on the 12th. Hopefully the wisdom tooth is growing in straight and wont push anymore on the other teeth, so I can avoid that completely. Let me know anything...Thanks again!
Thanks so much for your response! I remember your name, and you've been of help to me in the past. I appreciate your balanced, and logical point of view. I believe my TMJ dentist is a good one, and kind person. Perhaps he did give up a little on me. However, I m with you on the funcionality issue. My jaws don't open all the way up, but you know I've had a lot of success with just splint therapy compared to when I first went in. Even my tmj doc said that, and stopped speaking of the surgery after he did another muscle movement test..its the machine where they measure from side to side and up and down..not sure of the name. My fingers are skinny, that I admit, but my physical therapist said its a bit over 30mm opening. I can eat most things, brush/flossing is okay, and the thing i'm most glad about is my pain level is very low, and doesnt occur often at this moment. For that I'm very thankful. I believe its like your doctor said...surgery will help with the disc getting back on track but what about the results? I have pretty much concluded that I will continue this way, and just try to continue to use conservative measures, messages, splint, whatever I have to do to keep this stable. Hopefully in the future my jaw gets back on track, but if not..i don't want to risk having a foiled surgery. If you can recommend a good doctor to me, I am close to UCLA. I live in California. I saw one doc near there who I didn't like. He was not very sensitve. Thanks again 4 your input! Makes a lot of sense.
Also, what do you (or anyone) think about braces? The doctor recommended getting braces on after my jaw was relocated, however, I'm not sure that day will come soon. My tooth at the bottom has become turned in so to say from wearing the splint, and also I have a wisdom growing in in the back of my mouth which has caused one of my front teeth to move back behind the other front tooth. I really want braces!, but with my jaw dislocated i'm not sure its the best thing...I guess my question is... or my questions are 1. Can I get braces even though my jaw is dislocated , just to straighten up my teeth w/o compromising or worsening my discs? and 2. What if the regular dentist insists on taking out my wisdom tooth, should I let him even tho my tmj doc doesnt want him to as he says it might interfere with my progress? What do you guys think ? I mean i guess its more of a cosmetic concern for now until I go to the reg dentist on the 12th. Hopefully the wisdom tooth is growing in straight and wont push anymore on the other teeth, so I can avoid that completely. Let me know anything...Thanks again!
MaggieMay78
09-06-2006, 11:13 PM
Hi laskalady, if you are looking for a good conservative specialist, then I would highly recommend Dr. Andrew Pullinger at UCLA. I used to live in Arizona, and flew out to see him once. Unfortunately, I couldn't continue treatment with him because I ended up moving. BUT, I will say that he really knows his stuff, and is a very honest doctor. He did an extremely thorough examination and really listened to me. I think he is definitely worth seeing, if for no other reason than another opinion. He will be very honest with you about whether he thinks an arthrocentesis or any other procedure is necessary. I definitely agree that you should NOT rush into arthrocentesis right now. Continue with the conservative treatments, take a good anti-inflammatory medication, and take good care of your jaw until you can see a good specialist.
As far as braces...again, if you go see the doctor I recommended, then I would ask him about that. Ask him what he thinks about braces being used when you have displaced discs. If it is primarily for cosmetic reasons, then I would hold off on the braces! Many dentists say there is little evidence that braces cause TMJ problems...but I've heard of many people whose problems started while wearing braces. Again, it's important to discuss this with a knowledgeable TMJ doc.
good luck, and I am happy to hear that you're not rushing into arthrocentesis. Hang in there...I know it's tough. I am in a lot of pain too, and sometimes wish there was a quick fix. I know, however, that there is not...and so we just have to be patient. In the long run, I think it will be worth it! :)
Meg
As far as braces...again, if you go see the doctor I recommended, then I would ask him about that. Ask him what he thinks about braces being used when you have displaced discs. If it is primarily for cosmetic reasons, then I would hold off on the braces! Many dentists say there is little evidence that braces cause TMJ problems...but I've heard of many people whose problems started while wearing braces. Again, it's important to discuss this with a knowledgeable TMJ doc.
good luck, and I am happy to hear that you're not rushing into arthrocentesis. Hang in there...I know it's tough. I am in a lot of pain too, and sometimes wish there was a quick fix. I know, however, that there is not...and so we just have to be patient. In the long run, I think it will be worth it! :)
Meg
MaggieMay78
09-06-2006, 11:18 PM
oh, I forgot to mention the wisdom teeth...if your TMJ specialist says to be careful about that, then I would follow his advice! My problems started after a bad oral surgeon extracted my 4 impacted wisdoms. The key is to make sure of the following: 1) Is it really NECESSARY to extract the teeth? Sometimes dentists recommend it, even though it's not urgent. You may want to get another opinion about that. And 2) If you do absolutely have to have the teeth extracted, be sure to get a board-certified oral surgeon who has a good reputation, and is fully aware of your TMJ issues. You may not need an oral surgeon if it's an "easy" extraction (fully erupted and can be removed quickly). However, no matter who removes it, they must be VERY careful not leave your jaw open for too long, or overstretch it!
hope that helps...
Meg
hope that helps...
Meg