I have tried everything for TMJ. Four different TMJ specialists, splints, arthocentisis, alternative therapies, botox, physical therapy ... you name it. I have spent a fortune and still live in pain daily. I have been taking many muscle relaxers and narcotics for about 1.5 years. I get bilateral temporal headaches, joint pain, jawline pain and it all extends to the neck and shoulders. I've had other tests (labs, CT scan of brain, etc.) to rule out any other disorders and like my primary care doctors says... on paper I look perfectly healthy.
An MRI of my TMJ's show a left disc displacement without reduction, erosion of the condolye and bone spurring. No splint or PT has been able to move the disc back and I've been told that due to the erosion of the bone and the probable holes in the disc, it will never move back into the proper position. My pain management doctor says don't do the surgery, we'll keep you on pain meds the rest of your life. Yeah, that sounds great, doesn't it? Plus, the pain med's and muscle relaxers don't completely do the job. I am 32 and would like to have kids one day. I'm really restling with what to do next.
I had arthrocentisis one month ago and had a follow-up appointment with the surgeon yesterday. Next, he wants to do an arthroscopic surgery where he will go into the joint with a scope and a small instrument. He will try to break up scar tissue and adhesions, which he feels are restricting the movement of the disc. He said that the disc will not move into the correct place, but if we can get it moving it should ease the pain. He quoted a 70-80% success rate. This is an outpatient hospital procedure. Anyone know about arthroscopic? He is very conservative.... I've had other surgeons want to go straight to open joint.
i had a bilateral arthroscopic tmj surgery in oct. 2004. on the L i had a partial discectomy (the disc is still perforated) & on the R the disc was repositioned and sutured in place. it has been 5 months since the surgery and i have not been able to chew solid food. my once perfect bite was thrown off due to the surgery because my jaw deviated so far left. the surgeon damaged a facial nerve and my lower lip droops. the pain i had before the surgery was nothing and i mean NOTHING compared to the pain and dysfunction i feel now. i was on splint therapy before surgery and rushed it because i thought i knew it all. i was very, very wrong. my dentist begged me not to have the surgery and told me all the possible bad outcomes. lo and behold - they all have come to fruition. i basically robbed peter to pay paul. i thought if the surgery was not successful i would be back to where i was before the surgery. i did not know i would have opened pandora's box to a whole new set of disfunction and pain. this pain, post surgery is at 100. the pain i had pre surgery was a 10. my pain did not increase to a measurable level - it is off the charts. this "minimally invasive" surgery has left me with even less function and mobility and more pain. what the splint and nature were trying to do in increments to get my discs and pain back to a manageable level, surgery took away as my body does not know what was done to it. guess what? i still have to wear a splint 24/7 and go to physical therapy 3 times per week for relief. i still have to take pain meds - only they are much stronger now. if you do not think you can get worse from a surgery that you think will offer relief - think again. juulie, i would give ANYTHING to get back to the condition i was in the day before the surgery - i wouldn't even ask for the day before i was injured - i'd glady take my condition the day before the surgery - if i could get there. juulie, i too was quoted an 80% success rate and so was everyone else whom i've since met in my surgeon's office for all our follow ups. the consensus among us is that we all wish we never had this surgery. i have seen specialists since the surgery and one told me something that has stuck with me. he said, the best orthopedic surgeon in the world will operate on your knee, your elbow, your hip, your shoulder ...but will NOT operate on your jaw joint. why? think about this. juulie, i encourage you to stick with a conservative course of therapy and try as many splints as you feel necessary until you find one that will get you to a manageable level of pain and an improved level of function. i wish i had. i'd also encourage you to visit your surgeon's office on the days he sees his post-op patients and ask them questions about their before and after experiences. the very best of luck to you.
PWC, thanks for the input. I am so sorry you are enduring more pain. I wonder if our surgeons are talking about different procedures because he told me that he would NOT be suturing the disc into place and that the risk of nerve damage was low (not nearly as high as with an open joint procedure). Again, he said would not be performing any suturing of the disc or performing an discectomy or partial. He was simply going in with a scope and an instrument to try and locate the disc, break up scar tissue and adhesions.
Wow, your post really scares me. On the other hand, it seems like these may be different procedures. Was yours considered open joint? This is not considered open joint. I was told there would only be one small incision and one suture on the outside. No suturing on the inside.
my procedure was NOT considered open joint - it was, in fact, an arthroscopy. i've spoken to specialists since my surgery to try to get some answers on what exactly is the extent of the damage that was done and i have had these specialists all tell me 1 - they cannot believe how much damage this minimally invasive surgery caused and 2 - my surgeon did way too much. i can see now, after you wrote back, that your surgeon would not be suturing the disc or doing a partial discectomy. i thought my surgeon would have just repositioned the disc - he did not tell me he was going to suture it in place. he also did not tell me he was going to perform a partial discectomy. it was my understanding he was just going to do an arthroscopic procedure on both sides which involved repositioning the discs and flushing out the joints. he also broke up adhesions. i had very small incisions on both sides - 3 stitches per side on the outside. my surgeon practices in new york and i hope he is not your surgeon. another thing about my surgery is that he used a laser to break up the adhesions and i learned later on that the heat from the laser can cause a regrowth of scar tissue at a faster and more pronounced rate. ask your surgeon if he plans to use a laser or a trocar to break up your adhesions. also, ask him if he will cut any of the ligaments that are attached to your disc. mine did and that is one of the main reasons i think i have so much pain and LESS mobility in my joint. another poster named rubato DID NOT have the ligaments attatched to her disc cut and she has not had the trouble that i have had on the side where the ligaments have been cut. juulie, you seem to have clarified with your surgeon the details of your operation. if you are set on surgery, i do sincerely hope that your surgeon is as conservative as you say in your post. i thought i interviwed my surgeon thouroughly about what he was going to do but once he "got in there" he really went to town. your post makes me wish i had found your surgeon before i was unlucky enough to choose mine. i hope you are as lucky as rubato and not as unlucky as myself. i hope my experience serves as a comparison for what not to have done and maybe, it will serve to bring up issues with your surgeon that you did not before your surgery. i really hope this works out well for you.
Wow, pwc. I am so sorry this happened to you. You gave me some good information about the laser and ligaments and I will ask about these. I was told there would be one suture on the outside (where the scope goes in). He also said the instrument would break up adhesions and allow the disc to start moving again. I asked if he would suture the disc into place and he said no, absolutely not during an arthroscopic. I am in Arizona, the surgeon's name is Leslie Fish, DDS.
What a shame when you think the doctor will do one thing then doesn't stick with it. We put our trust in these doctors then they screw us over. TMJ is a crappy condition to have, that's for sure.
Is there anything else I should ask? I haven't decided if I going to do it or not. Still mulling it over.
My situation sounds extremely similar to yours. I am a healthy 30 year old male civil engineer who for the past 1.5 years has been suffering from the pain and quality of life associated with TMJ (right disc laterally displaced with reduction / early signs of joint degeneration). As I have mentioned earlier on this board, my local oral surgeon recommended I visit a major hospital or university who has the most possible experience with TMJ surgery, so I could make a very informed decision. After visiting Stanford University I have the following opinion of surgery:
There is a good success rate to surgery when performed by those who have adequate knowledge & experience to perform such procedures. Furthermore, the doctors at Stanford equate TMJ surgery to hip replacement surgery. You should hold off on the surgery as long as possible, because when it is performed, more than likely it we last for a finite period of time. I understand the difficulties of managing the pain. (I use medication, physical therapy, NTI) As discouraging as it is to hear, there is no cure. Personally after I accepted that I would be dealing with TMJ for the foreseeable future, I started to feel better on a mental level.
As for starting your family, I too will soon start a family. I contemplated many months about whether it was responsible to become a parent while in this condition. Everything in life is intended to be a lesson, and while I am unsure as to what TMJ will ultimately teach me, in the end I think it will allow me to teach my children to be companionate caring people who are subject to one another.
Don't ever forget that you are not alone, and if you keep the hope alive that someday help will be available for those of suffer from TMJ, you will persevere.
to tell you the truth, you seemed to have covered most of your bases with your surgeon. whatever you decide, i wish you the best. i also have to agree w/clayton3326 when he said he was told to put off the surgery for as long as possible because of the finite amount of time the results will last. i also considered this but i thought i was doing more damage to my joints by doing nothing. i was wrong: surgery should be a last resort. thanks for sharing your info with me. if i can think of any concerns you should bring up w/your surgeon i'll post them to you.
I have bilateral anterior disc displacement that came about as a sudden onset during a high-stress, physcial overload this past winter. My jaw actually dislocated due to high muscle tension. Whoops. Then it went back, but without the discs. Well After 3-4 months of conservative therapy (muscle relaxants, antiinflammatories, massage, TENS, physcial therapy, oral appliance, and arthrocentesis, things are pretty much the same. The reason I am writing is because I have been under the impression that the next course of action then is to "fix it" with the next most aggressive therapy, which is athroscopy of both joints. I got the same opinion from all parties involved, although with caution, and it seemed like this "minimally invasive" surgery was a logical next step.
Well I just want to thank you all for your varied personal accounts, because it gives me alot more to think about, and I am now way more educated than I was before hearing your stories. I most of all want to thank PWC, because you gave me critical information on the same practitioner. Thank you loads. If I even continue to proceed, I will employ all the recommendations you shared in your posts. Thanks. You have prevented someone else from having you go through the same experience.
Last edited by raylp; 05-21-2005 at 12:50 AM.
Reason: found answer
you're welcome. if my experience can prevent someone else from making a hasty decision and prompt them to question and compare then today i can honestly say, "i feel better." raylp, as i now say to everyone who employs conservatism in both action and thought when it comes to this tmjd, "you have made a wise decision." all the best, pwc.
We all know the pain this disorder causes and the havic it reaks throughout our lives...and, it is true. Most don't understand. I have people all the time telling me to take an aspirin...yah!! that's gonna work. My pain management doctor put me on Duragisic pain patch....
I wanted to voice my opinion, though it may be similarn to those who already have.
My first surgery was when I was 13....a bilateral arthroscopy. Over a period of 6 years, I went through multiple procedures. At 15, I went through two separate bilateral arthroscopies. The doctor's claimed the same success rate you quoted. But, let me tell you what happened...They all failed. One doctor had the blantant audacity to blame me for their failure....whatever.
By the time I was 17, I faced and underwent a bilateral open joint procedure. My discs were irreparable...because of the past surgical procedures...they were perforating through muscle. My synovial sacs were taken out. Muscles were biopsied. My doctor put in silastic implants. They perforated while I went bone on bone...to this day, doctors tell me I have connective tissue disease..from the silicone inside the implants.
At 18, I went through another bilateral open joint procedure. This time, the doctor used my ear cartilage as discs. It worked....for 11 years.
I am known as the 'screw lady'. I was eating a meal at a restaurant when halfway through..there was a screw inside my meal....and I bit on it.
Because of my surgical history, and the injury, I am facing (at 30yrs of age) a total joint replacement. I have had the consult for it....and, am awaiting insurance approval.. It is horrific to face such a surgery at this age...I am absolutely terrified.
This surgery is the absolute last thing that can be done. Nothing else. I have done the non surgical route for the past year....my pain is absolutely uncontrollable....
I work to keep my health insurance, though with each day, I find it more difficult.
I guess I tell you this to say, I understand your pain...really. It's exhausting, excruitiating, debilitating...to say the least. But, really think about surgery....the more you have done...the more you will need. I thought mine was done. finished. But, it may never be over, again..
Granted, I did have a wonderful, amazing break from it. And, my rebirth into this craziness was due to a screw....but, surgery is not always the answer. Please be careful.
I suffered horribly with TMJ in the 90's. I was misdiagnosed by 4 different Doctors who diagnosed me with Trigeminal Neuralgia, they hospitalized me weekly and put me on Steroids that made me gain 60 pounds (I have always been thin). They nearly killed me, all along I had already been diagnosed with TMJ but at the time no one knew how bad it really was. Luckily my Brother works for the Surgical Equipment Company that deals with Arthroscopic Surgery and pointed me to the leading Doctor in this type of surgery.
Here is his contact information:
Dr. Joseph P. McCaine
[Street mailing address removed]
[Telephone number removed]
He has even written a Textbook called: Diagnostic & Operative Arthroscopy of the Temporamandibular Joint Principles and Practice. I believe he also lectures at the University of Miami.
Anyway, long story short. I had both of my discs completely out of place. We tried with Splint therapy, Lavage (2 times) and nothing helped it just aggravated my pain. My pain was so dibiliatating that I could barely function. I was very afraid of the surgery but I finally just couldn't stand living that way any longer. I did it and had the Bilateral Endoscopic Surgery. I have to tell you the pain was intense and the recovery miserable (I will not lie). However, after that it changed my life. It has been 12 years since my surgery and I am extremely glad I did it. I will never forget the pain but if you compare it to the constant pain you feel now what's worse?
Even after surgery you will feel occasional discomfort on rainy days ect. if you've developed arthritis like I have but overall very manageble. After 12 years I am starting to get some popping again and a little bit of pain but it is only because I am under a lot of stress, I am not sleeping, and I am not wearing a splint (which you should always wear to sleep regardless) but I got cocky. This week I am going to get fitted for my new splint and will start some relaxation exercises at home.
I have to agree with the other person that wrote your jaw does move out of place. My front jaw came forward a lot and it changed my bite. The doctor says that it is because of the swelling. But it did go back after the swelling (not completely) but enough.
You have to really find the right doctor like I did and get a proper assessment as to what is going on with you. For me the couple of months of excruciating pain were worth being pain free in the future but of course there are always complications that can happen.
Good-luck to you and I hope you find resolution to this horrific nightmare. It stoled my 20's I sure as hec wasn't going to let it steal my 30's.
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Thanks for the information. Is Endoscopic surgery the same thing as arthroscopy? My understanding is that arthroscopy is where they go in with a scope and an instrument that breaks up adhesions and scar tissue and allows the disc to move around better. Is that what you had? If so, I'm happy to hear it worked for awhile!
My TMJ doc (great man!) told me last week he thinks an arthroscopy is a waste of time. Lavage did not work for me either. He does not think it will work and that I will just need disc removal later. So I had pretty much decided to forget arthroscopy and find a surgeon to do disc removal. But then I read something like your story and it makes me reconsider.
I hope you are feelling ok. Thanks again for all the information on the board. I've read alot of information here and am trying to process it. May I ask you a few questions about your case ?
My first question is in regard to the topic of overall arthroscopic success rates. You said in one of your posts that when you talked with other post-op patients in your doctor's office, that the "consensus among us all is that we wish we never had this surgery". I'd like to hear more about this.
Can you remember generally speaking, how many patients you spoke with? Also consensus means that everyone agrees, so do you mean to say that everyone that you met in the office who had gone through arthroscopic surgery wished they had not undergone this type of surgery?
Also, of this group of people, I wonder if you know generally how many had a case similar to yours, in that they had no prior surgeries?
Other questions are:
Did you ever investigate other surgeons in your area?
How long did you go between your initial lockup and your surgery?
What was your opening pre-surgery?
DId you have TMJ symptoms prior to the accident?
Do you have any other related health issues?
Why did your dentist want your jaw position to change?
Had your dentist sent anyone to this surgeon before?
I ask all these questions because your pre-surgical condition seems close to mine, and I working to assess the risks.
Also if there is anyone else out there with arthroscopic information, I would like to hear your story. I have tried to compile the information. So far I have found 17 arthroscopy cases on this site. 11 were successful and 6 were not.
That is a 65% success rate.
The 11 procedures that brought good results were: Rubato,(10yrs success) michaelw, Lizi, Christa79, Ohjelj, Silver Midnight, autumn83175 (lasted 3 yrs, a success considering status of discs),christa79,limabeans03,maggieJean, Kb1416.
The 6 procedures that did not bring good results were: Charlene, Meditation, PWC, road8, suepal713, kaylbe. Charlene had procedure done in 1980's from what I read, Meditation had several done in late 1980's and 1990, and PWC had one in 2004 that had serious complications.
I have also seen a few people who have inquired about arthroscopic surgery and maybe even indicated that they were planning it, but I haven't found follow up data. Not sure if no news is good news or what. these names include gator1301 (2001) and Autumn Angel (banned)(2003),Tmj lady, staize.
I am particularly interested in cases in which arthroscopy was done prior to arthroplasty, because I am developing a hypothesis that arthroplasty might lead to greater complications than arthroscopy, which is why now generally it comes after arthroscopy.
Also, I I have in any way misrepresented anyone's story, please let me know and I will promptly remove it. I am just trying to offer a synopsis of probably 30 + hours scanning through these stories so that someone can get an idea of who has had the surgeries.
If you are considering surgery, please do your homework. Don't be hasty. Get several opinons, and ulitimately come to your own decision. This is a very complex joint to be treated, and can have serious complications. If you go through the posts of the people above, you will find alot to chew on. oops sorry.
Also, if you do have surgery, please come back and share your results, because it can help others find their way.
when i spoke w/other patients (about 8 - all female) each and everyone said "i was better before the surgery." even with the pain and dysfuction, we all agreed that the compromised jaw we had before surgery could be better managed than the pain, dysfunction and the new hosts of problems brought on by surgery. only thing was: we didn't know it. it took surgery to realize how well off we were. it wasn't just the arthroscopic surgery. people were saying "i wish i never had my first surgery. it lead to other surgeries." some patients started out with open joint as they had surgery years ago when arthroscopic wasn't an option. others had the lysis and lavage and wound up progressing to more complicated surgeries because the "first one wasn't a success." i can tell you that i know that 5 out of the 8 had prior surgeries. 2 were teenage girls who each had 3 surgeries: one had lysis and lavage and 2 arthroscopics, the other girl had lysis and lavage, another type of surgery and arthroscopic. 2 other women had multiple surgeries and now have implants and are not "doing well." one other woman started out with open joint. the teenage girls, the woman that had open joint, and one woman who has implants were there because they (like me at the time) could not open their mouths (after surgery) to accommodate more than "one finger." 2 could not even use the therabite to try to obtain a better opening - it would not fit into their mouth. i investigated other surgeons but made a choice for my surgeon as his name kept coming up in on-line research and in conversation w/other surgeons. my dentist did not send me to anyone as he was adament i have no surgery. i defied him and paid a price. my initial locking was about 4 years ago but it was very sporadic, i had no other symptoms and i "managed it." it wasn't until last year that i locked closed and had to keep popping the joint (disc) in and out in order to open and close my mouth. i did this all day long for eating, brushing teeth, dental appt.s, sometimes to speak... that lead me to say, "well, i lasted this long. what i'm doing to my jaw cannot be good for it - i think i need surgery." my health, other than tmjd is fine. pre-surgery, my opening was about 20 and post, it fluctuates between 26-30. my dentist wants (and wanted all along) for my jaw position to change to a more downward/forward position (like the gelb 4/7 vacinity) which provides a better position for the mandible - more room for the joints. this wasn't working fast enough for me and i made a hasty and stupid decision to have surgery. i now have to wait for the surgical damage to heal and will then continue with the splint therapy to fine tune the joint position. i hope i answered your questions. if you are contemplating surgery, you may want to spend a day in the waiting room of your surgeon on the day he sees his post-ops. you may get more info. personal stories are the best stories and sometimes other tmjd patients can answer your questions best. good luck w/your research. at the very least, you are not making a hasty decision - that's good.