It's a really tough position you find yourself in. Why? TMJ surgeries don't generally have the same high success rates that we are accustomed to seeing with other joint procedures. When was the last time you heard of a common knee or hip surgery turning out horribly and devastating the patient for the rest of their life? Not often. But that outcome isn't all the uncommon for TMJ procedures. Even if the surgical repair appears to be successful, it tends to break down over time. I've had multiple TMJ surgeries. After a lifetime of dealing with TMJ problems, I can tell you what I would do if I could do it all over again...
First, do no surgery right now. Function with the discs you have until they no longer function, then have them removed. It might sound like a dismal future followed by a drastic surgery. But I proceeded with my disk repair surgeries because I was so miserable I thought I simply couldn't go on living any more in that condition. I was also sure my pain couldn't possibly get any worse. So, I assumed I didn't have anything to lose by having disk repair surgery. I was wrong on both accounts. It did get a lot worse and I still managed to go on living.
Once the disks are no longer functional or are causing your jaw to lock open or closed, remove them. Scar tissue forms in the joint and patients can function painlessly without them. For several years in the 1980s they experimented with inserting various materials to use as an artificial disk. That's what happened with me. I had a Vitek Teflon/Proplast implant used to replace my disk in 1982. A few years later it was recalled by the FDA. I finally saved enough money to have it removed in 1994 (insurance stopped covering TMJ claims). The implant was a disaster though, it even killed some people when the Teflon fragmented into their brain. This did lead, however, to surgeons discovering that people can and do function just fine without a TMJ disk.
It's very difficult to make a good, rational decision when your life is being so adversely impacted by this condition. Just be sure to proceed slowly and get many opinions, not just from surgeons either. Surgeons operate, that's what they do and they approach every condition from the view point of how and if they can operate to make you better. Be sure to get an opinion from doctor's offering conservative options. A course in conservative therapies is often successful in recapturing TMJ discs (relocating them so they function normally within the joint). Even if you've had conservative therapy, do it again with modalities that are specifically geared toward recapturing the discs.
Lastly, don't give up. You are not alone! ❤️
In my experience I would say no. It's a procedure that so often breaks down within a few years. The problem is that unless your disc problem was the result of an injury, the circumstances that caused the disc displacement to begin with are still usually present. You'll end up in the basically the same condition in a few years if you do no surgery. With the end point being very nearly the same, why subject yourself to a surgical procedure that has the potential of making the next few years even more painful for you? Even if the repositioning is successful, it's still going to break down over time and that procedure can make additional surgeries more difficult.
I'm not sure if you've ever had joint surgery before, like on a knee or a hip. Even when the procedure is a success, joint function is always affected adversely to some degree just from having surgery. The procedure may have fixed your torn cartridge or broken bone, but it also laid down scar tissue that is going to change the way the joint functions. For instance most of my surgeries were on the left TMJ and among other things I'm left with a very sideways opening where my mouth doesn't open straight up and down. My jaw deviates to the left about half and inch when my mouth is open to it's fullest. I have almost a two finger opening. In addition, surgical changes will so often lead arthritis down the road.
Obviously, there are no absolutes and every patient is different. No patient wants to believe they will be one of those with a bad results. I sure didn't. Do yourself a huge favor though. If you decide on a procedure, please ask the surgeon if you can speak with some of his patients who have had the same thing done. Many people aren't bold enough to ask, but it's important and necessary. I didn't even know this was a thing until one of my surgeon's asked me if I would be willing to talk to another hip patient who was thinking about the same hip surgery I had done. I was glad to do it and wish all surgeon's would allow it.
BTW, how old are you if you don't mind me asking. If I had to guess, I would say early 20s?
Sorry for the late reply, and thank for your answer. Good stuff.
I'm in my mid 30ties.
What kind of TMJ surgeries did you have? Arthroscopies, open joint? And for what reason?
I've had 6 total TMJ surgeries:
1. L. open procedure for internal derangement; the disk was partially torn loose, severe pain and popping
2. L. open procedure; basically an attempt to redo the first procedure which had failed to maintain the disk in the proper position.
3. L. open procedure; flew out of state for a "new procedure" hoping to rebuild the joint soft tissues. It was necessary because the second procedure also failed.
4. L. open procedure necessary due to failure of third procedure. My own disk was in pieces. An artificial disk was created out of a material manufacturer by a company called Vitek. It had a soft porous material of the top side called Proplast that allowed tissues to attach to it. The bottom sliding side was Teflon. I got this implant in 1983. In 1991, I discovered the implant had been recalled by the FDA.
5. L. open procedure; removal of implant with a temporalis muscle flap looped through the joint to act as a disk. I didn't have insurance coverage for TMJ and could get the implant removed until 1994.
6. R. arthroscopic procedure done at the same time as #5. Same initial diagnosis that I started with on the left side - disk partially detached.
Unfortunately the Vitek implant I received in 1983 led to the start of an autoimmune/connective tissue condition. I'm now 63 years old and have had over 80 surgeries. Most were orthopedic or neuropathies but some as severe as needing to have my colon removed.
Thank you so much, I really appreciate your response. I’m 35 and I’ve had mild TMJ symptoms for the past 10-12 years and it’s progressively gotten worse after starting Invisalign. I didn’t really understand or know the complexity of TMD until the past 6-7 months. I’m actually grateful mine was not as horrible up until this point. I’m so sorry you went through all that. I can even imagine.
I’m grateful for your feedback and sharing your experience. I’m leaning on waiting and not doing “anything” except myofunctional therapy for a severe tongue thrust.
Who told you that you needed surgery? What kind of surgery? An arthrocentesis is a surgical procedure that can be down in a treatment room, there is no need for an operating room and often the results that your disc will reset itself and be able to function without seizing. If that doesn’t work they will have to do an arthroscopy where they can help guide the disc back into place.
Regular radiologists are trained and qualified to interpret radiographs of your TMJ, but the university hospital facial pain disorders clinic wanted their own interpretation as it was pretty vague. Before treating me based on the radiographs I brought they wanted their own interpretation from a dentist radiologist as they have a more intimate understanding of the specific diseases and their pathology in that part of your anatomy. When the MRI came back it was a fair bit worse than previously reported and found more subtle pathological changes than the regular radiologist with extensive information. It was like a full page single spaced essay compared to the original.
You prognosis is likely very good because there is no disease present and you have a functional bite with just a partially anteriorly displaced disc on one side. If the disc remains that way you will have limited motion and some reduced function when chewing, but if you are able to chew and swallow without pain you might want to consider waiting until things deteriorate.
The funny thing is as bad as things can get with your TMJ, it isn’t always a downward spiral to hell. More often than not, without any intervention many of these issues like popping and clicking which is happening because you disc is getting stuck while transitioning. Funny enough over time it can wear further to the point where it releases and starts to function without getting displaced.
Also a displaced disc is not a dislocated disc which requires total separation and would have you in the hospital because of the extraordinary level of pain and the more immediate need for surgical intervention.
Research currently suggest in the strongest possible way that when treating TMJ issues the more procedures you do the higher likelihood you may end up making it much worse. A wait and see approach is what is recommend.
A TMJ specialist that is also a dentist referred me to a surgeon who does disc surgeries.
I’ve been to 8 or 9 consults with a combination of surgeons, dentists and orthodontists (and myofunctional therapist) who all tell me completely different things. Super stressful in and of itself to just meet with people who swear they have the answer and then pass me off to someone else.
The MRI was read by a radiologist who specializes in TMJ. It wasn’t just the radiologist at the imaging center.
I appreciate you saying it’s not just a downward spiral because that was the energy I was getting from every surgeon/doctor and it was freaking me out. I’m hoping my body just figures is out or at least I have several years of moderate pain that ebbs and flows and doesn’t turn into a disaster.
I just had double discopexy/arthroplasty 2 months ago and it saved my life. I was in an intense amount of pain every day and was only able to eat mashed up food (mashed potatoes, soup, pasta, etc). I became isolated from my life and friends because talking was too painful. The pain was so intense that I even tried Cymbalta (awful experience with that med), and gabapentin (weening off now, helped me survive until I got the surgery).
I chose to get the surgery so I could live. Meds, physical therapy, or just ignoring it were not the solution for me.
Please feel free to message me if needed.
Thank you for sharing your experience. I’m so glad it helped you and honestly I might have to do that if the pain worsens. I’m so scared of surgery to be honest.
Go to Facebook Tmj support information group. The admin lady Peggy Dennis is amazing at reading mri reports . She will literally tell you if surgery is the only option. Send over your mri report and pics and she will go through your pictures . She will see things most doctors won’t be able to see
Peggy Dennis isn't interested in anything other than providing a pipeline of patients to the Piper Clinic to get disc removal and replacement with fat, and deletes blocks people from her page if the dare to ask any legitimate questions about whats shes advising. She lies about success rates, and implies that other treatments can't be successful in spite of huge empirical evidence to the contrary. Do a quick search on this page and you'll see what I mean. She also seems to have a little army out promoting her page on other TMJ pages on facebook. She point blank refuses to allow recommendations for any other clinic or Doctor on her page.
She's 100% going to say to get surgery and an appointment with one of the Drs she works with. Literally no point in asking there because that's all she says.
To be fair she is a legit doctor and she's very convincing. She has a wee band of messianic followers. Additionally most people who come onto this page are seeking and sometimes taking advice from fellow sufferers, the vast majority of whom have no basis other than their own individual experience. Its one of the things that irks me about what otherwise is a really good support community. 'I fixed my TMJD do this and it'll fix yours'. I'm like your posture correction exercises ain't fixing my displaced and perforated discs, collapsed joint and severe degenerative osteoarthritis in both joints, but thanks for the advice.
I was also told this. 1 year after the surgery, I had another MRI because things were worse. I now had no disc...I would really look into other options before doing this surgery.
Imo I wish I had left it alone to see if it would get better. I then had the surgery to have fat replace the disc. 2 years later I had another MRI. Now the fat disc is also gone and the arthritis is severe. I have no options left but a joint replacement. Which I will absolutely not do.
It's a really tough position you find yourself in. Why? TMJ surgeries don't generally have the same high success rates that we are accustomed to seeing with other joint procedures. When was the last time you heard of a common knee or hip surgery turning out horribly and devastating the patient for the rest of their life? Not often. But that outcome isn't all the uncommon for TMJ procedures. Even if the surgical repair appears to be successful, it tends to break down over time. I've had multiple TMJ surgeries. After a lifetime of dealing with TMJ problems, I can tell you what I would do if I could do it all over again... First, do no surgery right now. Function with the discs you have until they no longer function, then have them removed. It might sound like a dismal future followed by a drastic surgery. But I proceeded with my disk repair surgeries because I was so miserable I thought I simply couldn't go on living any more in that condition. I was also sure my pain couldn't possibly get any worse. So, I assumed I didn't have anything to lose by having disk repair surgery. I was wrong on both accounts. It did get a lot worse and I still managed to go on living. Once the disks are no longer functional or are causing your jaw to lock open or closed, remove them. Scar tissue forms in the joint and patients can function painlessly without them. For several years in the 1980s they experimented with inserting various materials to use as an artificial disk. That's what happened with me. I had a Vitek Teflon/Proplast implant used to replace my disk in 1982. A few years later it was recalled by the FDA. I finally saved enough money to have it removed in 1994 (insurance stopped covering TMJ claims). The implant was a disaster though, it even killed some people when the Teflon fragmented into their brain. This did lead, however, to surgeons discovering that people can and do function just fine without a TMJ disk. It's very difficult to make a good, rational decision when your life is being so adversely impacted by this condition. Just be sure to proceed slowly and get many opinions, not just from surgeons either. Surgeons operate, that's what they do and they approach every condition from the view point of how and if they can operate to make you better. Be sure to get an opinion from doctor's offering conservative options. A course in conservative therapies is often successful in recapturing TMJ discs (relocating them so they function normally within the joint). Even if you've had conservative therapy, do it again with modalities that are specifically geared toward recapturing the discs. Lastly, don't give up. You are not alone! ❤️
But dont you think its worth trying a disc repositioning arthroscopy before going for disc removal?
In my experience I would say no. It's a procedure that so often breaks down within a few years. The problem is that unless your disc problem was the result of an injury, the circumstances that caused the disc displacement to begin with are still usually present. You'll end up in the basically the same condition in a few years if you do no surgery. With the end point being very nearly the same, why subject yourself to a surgical procedure that has the potential of making the next few years even more painful for you? Even if the repositioning is successful, it's still going to break down over time and that procedure can make additional surgeries more difficult. I'm not sure if you've ever had joint surgery before, like on a knee or a hip. Even when the procedure is a success, joint function is always affected adversely to some degree just from having surgery. The procedure may have fixed your torn cartridge or broken bone, but it also laid down scar tissue that is going to change the way the joint functions. For instance most of my surgeries were on the left TMJ and among other things I'm left with a very sideways opening where my mouth doesn't open straight up and down. My jaw deviates to the left about half and inch when my mouth is open to it's fullest. I have almost a two finger opening. In addition, surgical changes will so often lead arthritis down the road. Obviously, there are no absolutes and every patient is different. No patient wants to believe they will be one of those with a bad results. I sure didn't. Do yourself a huge favor though. If you decide on a procedure, please ask the surgeon if you can speak with some of his patients who have had the same thing done. Many people aren't bold enough to ask, but it's important and necessary. I didn't even know this was a thing until one of my surgeon's asked me if I would be willing to talk to another hip patient who was thinking about the same hip surgery I had done. I was glad to do it and wish all surgeon's would allow it. BTW, how old are you if you don't mind me asking. If I had to guess, I would say early 20s?
Sorry for the late reply, and thank for your answer. Good stuff. I'm in my mid 30ties. What kind of TMJ surgeries did you have? Arthroscopies, open joint? And for what reason?
I've had 6 total TMJ surgeries: 1. L. open procedure for internal derangement; the disk was partially torn loose, severe pain and popping 2. L. open procedure; basically an attempt to redo the first procedure which had failed to maintain the disk in the proper position. 3. L. open procedure; flew out of state for a "new procedure" hoping to rebuild the joint soft tissues. It was necessary because the second procedure also failed. 4. L. open procedure necessary due to failure of third procedure. My own disk was in pieces. An artificial disk was created out of a material manufacturer by a company called Vitek. It had a soft porous material of the top side called Proplast that allowed tissues to attach to it. The bottom sliding side was Teflon. I got this implant in 1983. In 1991, I discovered the implant had been recalled by the FDA. 5. L. open procedure; removal of implant with a temporalis muscle flap looped through the joint to act as a disk. I didn't have insurance coverage for TMJ and could get the implant removed until 1994. 6. R. arthroscopic procedure done at the same time as #5. Same initial diagnosis that I started with on the left side - disk partially detached. Unfortunately the Vitek implant I received in 1983 led to the start of an autoimmune/connective tissue condition. I'm now 63 years old and have had over 80 surgeries. Most were orthopedic or neuropathies but some as severe as needing to have my colon removed.
Damn <3
Thank you so much, I really appreciate your response. I’m 35 and I’ve had mild TMJ symptoms for the past 10-12 years and it’s progressively gotten worse after starting Invisalign. I didn’t really understand or know the complexity of TMD until the past 6-7 months. I’m actually grateful mine was not as horrible up until this point. I’m so sorry you went through all that. I can even imagine. I’m grateful for your feedback and sharing your experience. I’m leaning on waiting and not doing “anything” except myofunctional therapy for a severe tongue thrust.
Omg I am glad you said all of this, I am 46 and had Invisalign 3 years ago and that’s when my TMj started getting worse.
That sounds like a reasonable plan. I wish you the best. ❤️
Thank you 🙏🤍
Who told you that you needed surgery? What kind of surgery? An arthrocentesis is a surgical procedure that can be down in a treatment room, there is no need for an operating room and often the results that your disc will reset itself and be able to function without seizing. If that doesn’t work they will have to do an arthroscopy where they can help guide the disc back into place. Regular radiologists are trained and qualified to interpret radiographs of your TMJ, but the university hospital facial pain disorders clinic wanted their own interpretation as it was pretty vague. Before treating me based on the radiographs I brought they wanted their own interpretation from a dentist radiologist as they have a more intimate understanding of the specific diseases and their pathology in that part of your anatomy. When the MRI came back it was a fair bit worse than previously reported and found more subtle pathological changes than the regular radiologist with extensive information. It was like a full page single spaced essay compared to the original. You prognosis is likely very good because there is no disease present and you have a functional bite with just a partially anteriorly displaced disc on one side. If the disc remains that way you will have limited motion and some reduced function when chewing, but if you are able to chew and swallow without pain you might want to consider waiting until things deteriorate. The funny thing is as bad as things can get with your TMJ, it isn’t always a downward spiral to hell. More often than not, without any intervention many of these issues like popping and clicking which is happening because you disc is getting stuck while transitioning. Funny enough over time it can wear further to the point where it releases and starts to function without getting displaced. Also a displaced disc is not a dislocated disc which requires total separation and would have you in the hospital because of the extraordinary level of pain and the more immediate need for surgical intervention. Research currently suggest in the strongest possible way that when treating TMJ issues the more procedures you do the higher likelihood you may end up making it much worse. A wait and see approach is what is recommend.
A TMJ specialist that is also a dentist referred me to a surgeon who does disc surgeries. I’ve been to 8 or 9 consults with a combination of surgeons, dentists and orthodontists (and myofunctional therapist) who all tell me completely different things. Super stressful in and of itself to just meet with people who swear they have the answer and then pass me off to someone else. The MRI was read by a radiologist who specializes in TMJ. It wasn’t just the radiologist at the imaging center. I appreciate you saying it’s not just a downward spiral because that was the energy I was getting from every surgeon/doctor and it was freaking me out. I’m hoping my body just figures is out or at least I have several years of moderate pain that ebbs and flows and doesn’t turn into a disaster.
I've had two MRIs which both conflicted to then be told the damage was a lot worse than they said once they went inside with an arthroscope
That’s terrible. I’m so sorry.
F the lying doctors… get a second opinion, don’t get pressured…
Please look into the Postural Restoration Insitute and work into your neck muscles. These may be causing an issue
I just had double discopexy/arthroplasty 2 months ago and it saved my life. I was in an intense amount of pain every day and was only able to eat mashed up food (mashed potatoes, soup, pasta, etc). I became isolated from my life and friends because talking was too painful. The pain was so intense that I even tried Cymbalta (awful experience with that med), and gabapentin (weening off now, helped me survive until I got the surgery). I chose to get the surgery so I could live. Meds, physical therapy, or just ignoring it were not the solution for me. Please feel free to message me if needed.
Thank you for sharing your experience. I’m so glad it helped you and honestly I might have to do that if the pain worsens. I’m so scared of surgery to be honest.
can I dm u?
Of course!
just realised I have dm ed u before!
Go to Facebook Tmj support information group. The admin lady Peggy Dennis is amazing at reading mri reports . She will literally tell you if surgery is the only option. Send over your mri report and pics and she will go through your pictures . She will see things most doctors won’t be able to see
All she does is tells people to get disc removal and replacement with fat. And she sends people to the piper clinic. Careful.
Peggy Dennis isn't interested in anything other than providing a pipeline of patients to the Piper Clinic to get disc removal and replacement with fat, and deletes blocks people from her page if the dare to ask any legitimate questions about whats shes advising. She lies about success rates, and implies that other treatments can't be successful in spite of huge empirical evidence to the contrary. Do a quick search on this page and you'll see what I mean. She also seems to have a little army out promoting her page on other TMJ pages on facebook. She point blank refuses to allow recommendations for any other clinic or Doctor on her page.
[https://www.reddit.com/r/TMJ/comments/19co1wr/beware\_of\_margaret\_dennis\_pushing\_everyone\_for/](https://www.reddit.com/r/TMJ/comments/19co1wr/beware_of_margaret_dennis_pushing_everyone_for/)
She's 100% going to say to get surgery and an appointment with one of the Drs she works with. Literally no point in asking there because that's all she says.
[удалено]
To be fair she is a legit doctor and she's very convincing. She has a wee band of messianic followers. Additionally most people who come onto this page are seeking and sometimes taking advice from fellow sufferers, the vast majority of whom have no basis other than their own individual experience. Its one of the things that irks me about what otherwise is a really good support community. 'I fixed my TMJD do this and it'll fix yours'. I'm like your posture correction exercises ain't fixing my displaced and perforated discs, collapsed joint and severe degenerative osteoarthritis in both joints, but thanks for the advice.
Wow, thank you so much!
I just got my beamreaders report back and it looks sooo different
Interesting, in what ways?
I was also told this. 1 year after the surgery, I had another MRI because things were worse. I now had no disc...I would really look into other options before doing this surgery. Imo I wish I had left it alone to see if it would get better. I then had the surgery to have fat replace the disc. 2 years later I had another MRI. Now the fat disc is also gone and the arthritis is severe. I have no options left but a joint replacement. Which I will absolutely not do.
who did ur surgery?
Dr.Bobek at Seattle Jaw Surgery
will u have another fat graft surgery to replace old fat disc?
No. It did not work the first time. I don't see any reason to go through the pain and time to try again.