Possible Surgery!

I just want to clarify that the oral surgeon recommending surgery is not the same one who did my extractions!

Hi meg,
before you try any surgery, you really should try anything and everything else to relax the muscles. ***all*** tmj surgeries do not have a high enough success rate to risk it I believe. I wanted to have the arthrocentesis surgery after suffering off and on with tmj for 23 years. I was in a really bad, non-stop flare-up when I started doing research. What I found was very discouraging and decided against the surgery after two years of contemplating it.

Many people have out-of-place or deteriorated tmj discs. Surprisingly, many of those people live pain free. But you have had a trauma to your jaw joint. Instead of doing more trauma to it, it needs to heal and how do you heal a sprained foot? - rest, ice, compression, elevation. Well, with the tmj you can't do most of that so the next best thing is ice and heat interchangeably, soft food diet for a few weeks or months, and a bite splint to take the pressure off the jaw joints and allow the muscles and ligaments to relax back into a working condition. You might also try some valium or muscle relaxants at night so the muscles will relax while sleeping.

I highly recommend that you get some more opinions from tmj dentists (not oral surgeons (surgeons-surgery)). A good bite splint is worth it's weight in gold, unfortunately, there are too many bad makers and adjusters of bite splints so it can be frustrating. It may take some time, but a lot of damage was done when that fool (excuse my language) pulled your wisdom teeth like he did. Sometimes I wonder about some medical people (dental included).

The basic rule of tmj treatment is to start conservatively and don't do anything irreversible or invasive (unless the last option and then I don't know if I could do it).

I hope this helps.
God bless...
Carol

p.S. It is very normal for the pain to be on the side with the least damage. Tmj is bizarre that way. Oh, and my tmj has calmed down a lot since I did everything else (new bite splint, pain management, cranial sacral massage therapy, posture change, stress reduction in a nutshell).

Carol,

thanks for your input! I appreciate it...By the way, what type of problem do you have (dislocation, degeneration?) have you had an mri or other advanced imaging done? Just curious to know what is going on...I am very sorry to hear you've been suffering for 23 years!

I agree, surgery is scary, and from everything i've read, it seems like it should be a last resort for tmj. This is not the first time I have been injured by a medical "professional." believe it or not, during one surgery on my leg, the surgeon actually broke my hip! A broken hip is a devastating injury, but fortunately I was young at the time...But anyway, yeah, it is so important to be cautious when it comes to any type of surgery.

Anyway, I have been taking muscle relaxants for quite some time now, and also have a nightguard that was adjusted several times by the oral surgeon. Still, I am not ready to consent to surgery just yet. I am looking to find the best "experts" out there, try some other treatments, etc.

Thanks again!

--meg

Hi meg,
I am sorry that you're facing these decisions. Catswold is right, surgery should only be done when all conservative treatments have failed. Even then, it is good to get several opinions.
Are you willing to travel?

As for the individual surgeries you mentioned, arthrocentesis is the first surgery most patients get. First the joint is numbed, then flushed with saline. Sometimes steroids are injected. The purpose of this procedure is to lubricate the joint, reduce inflammation, and/or increase function. If a surgeon tells you that this will decrease pain, I would be very skeptical. Also, some surgeons insist that this procedure can recapture the discs. I have yet to meet anyone who has recaptured discs with an arthrocentesis.
There are several reasons why an arthrocentesis is recommended for your first surgery...
1. It is the least invasive
2. It is done under iv sedation
3. It is done in the office
4. Recovery time is minimal (if there is any recovery at all)
5. It is cheap.
As with any surgery, there are disadvantages:
1. The surgeon cannot visualize the joint space therefore he does not know what is going on in there.
2. Disc recapturing is unlikely.

As for the second surgery, an arthroscopy, here are the advantages:
1. The surgeon can visualize the joint space
2. It is outpatient
3. Sometimes, surgeons say that they can recapture discs and suture them into place.
Disadvantages:
1. More expensive than the arthrocentesis (much more!)
2. The surgeon does not have much space to work with as he would in an open joint surgery.
3. The recovery is shorter and the scar is smaller than open joint surgery.
4. General anesthesia is required ($$)


there are studies that say the arthrocentesis is more successful than an arthroscopy. Many surgeons limit their practices to doing arthrocentesis, discectomy (open joint surgery with disc removal) and total joint replacements because those are the surgeries that they believe work best. In my opinion, the good surgeons are starting to phase out arthroscopy. If you have an mri and have seen what is going on, why go in and take a look??

The mitek anchor is a surgery that was done a little bit in the late 90's early 00's. I have met few people that have had it done... But the people I have met haven't had satisfactory results. I think that one should avoid placing any type of foreign substance in the joints for as long as possible.. Including titanium.
If the discs are in such bad shape, you might want to ask your surgeon - why not just remove them? Discectomy has proved to be a successful surgery especially in patients that do not have a problem with abundant scar tissue. However, this is seen as a more aggressive/drastic approach.
Although basically, you want to have as few surgeries as you can. If you can have one surgery and feel better, that is the goal. So in my opinion, sometimes you have to go more aggressive to get success.

Of course, these are all just my opinions. I hope that you won't need surgery at all! I have had arthrocentesis, arthroscopy, and arthroplasty.
Feel free to ask any questions.

I think the most important thing you said in your post was "most of my pain is muscular." before any surgery is done you must get a handle on the muscular problems, because if you don't, they will still be there after.

Sockmonkeyl,

thank you for offering your opinions about this...And for being so specific! You confirmed a lot of what I was thinking, after doing some research. It seems that arthrocentesis and arthroscopy are pointless...Sadly, out of all the "options" offered to me, the mitek seems like the one that could have the best chance for success..But the risks also seem high. Btw, I also already have titanium in another part of my body (the femur/hip). I have had 6 surgeries on that (due to one surgeon's mistakes!) and am not thrilled at the prospect of having more titanium implanted in my body! I am only 27!

One good thing is that, at least with my 6 major leg/hip surgeries, I didn't form a lot of scar tissue. I don't know if that would hold true with the tmj area...But I am hoping if I ever absolutely need surgery there, that I wouldn't form a ton of scar tissue.

As for my discs...I was not told the discs themselves are in bad shape. They are simply out of place. The one on the left side is not even that far out of place. And, after picking up a copy of my mri report, I found out that both discs are still reducing...So i'm not sure I understand the big deal, if they are both popping back into place when I open my mouth. I do have a "trace amount of fluid" in the left joint, but I think most of my pain and somewhat limited opening is due to muscular spasms. So, I am thinking of seeing a world-renowned tmj specialist in jersey, that i've heard a lot of good things about. I learned from the hip fiasco that it pays to see the most reputable docs, no matter where you have to go.

If you have any recommendations for docs, please let me know...I am very sorry to hear you've had so many surgeries. What kind of condition are you in now?? And what kind of results did your friends have with the mitek surgeries (what specificially were the negative consequences...Did the discs slip somehow? More pain?)

thanks and let me know more about yourself..I see you are new to the board like me. I hope that you are feeling ok!

-meg

Hi,

i totally agree about surgery being the last option, I had degenerative arthritis in my left tmj due to a fracture going unnoticed a few years back, arthocentesis was mentioned only briefly before it was decided to give me a rib graft, this was very invasive and traumatic (2 wounds), this failed, as the graft did not take, the graft then moved and fused itself to another part of my jaw causing further problems. It was then decided to remove the fused bone and replace all with a titanium joint, this was done exactly one year ago, guess what? Yep failed again, due to the fact that my body rejected the titanium (saw it as a foreign body), when they came to remove the titanium joint my body had so aggressively attacked the metal that the joint was in 2 pieces (aeroplanes are made from this very strong material), so I am at the moment living without my left tmj and awaiting a hospital appointment on the 10th may with my surgeon to see what can be done for my right side which is deteriorating very quickly. The prospect of more surgery is terrifying due to the fact that I have had no success. So don't really know whats ahead for me.

Anyway take care.
Sammi from scotland

Hi sammi, i'm really shocked to hear about your surgeries...That a rib graft was the first thing they tried?! And your body rejected titanium?! Titanium is supposedly the most "biocompatible" metal for the human body. I don't mean to get you down, but i've never heard of anyone's body breaking it down like that...It is extremely strong! I hope you can find the help you need, but please, please try to find the best surgeon possible. Sure, there are cases where even the best of surgeons cannot help much....But then there are also many cases where a surgery fails because the surgeon lacks the necessary skill. Anyway, please keep us posted. What do you do for pain relief now?

Meg

Yes a rib graft was the first option I was given, like I said arthrocentisis was talked about briefly, but I was never given that option, I think the scan showed to much damage for this to do any good. With regards to the titanium, apparently I should have been given an allergy test? This would of course have proven positive and maybe another material could have been used, I really don't know. One thing that keeps coming to mind is the fact that yes titanium is extremely strong, so maybe the joint was faulty?? Do you know if there is such a thing as a prothesis made totally metal free, ie plastic. Silicon etc, but I suppose the screws to hold it in place would have to be metal?? I am panicking about my right side, as surgery on the left was a catalogue of failures!! I also have lost confidence in my surgeon, which is not good.

I was offered pain management at my last appointment but I would rather manage that myself. I take anti-inflamatorys as my face still swells quite a bit, also codeine and paracetamol, low dosage when I can manage and higher strength when the pain gets unbeareable. My stomach has been damaged over the years so I try to keep painkilllers to a minimum.

Take care and chat soon.

Samara

Hi samara, I really don't know enough about testing for metal allergies...Like I said, I currently have a large titanium rod in my right thighbone, as well as four titanium screws to lock it in place. Prior to that, I had a stainless steel rod as well. I never had any problems with allergies...As far as I know, titanium is usually well-tolerated by most people, so your story is kind of perplexing. I wish I could offer an explanation, but unfortunately I can't :(

i also do not know much about joint replacements...As far as I know, at least here in the u.S., they are usually using titanium now. Anyone who knows otherwise, correct me if i"m wrong!

I am really sorry to hear about your lack of confidence in your surgeon. It is so important to be able to trust your surgeon. Is there anyone else you could consult with that could better answer your questions? Also, have you tried any muscle relaxing drugs? Maybe that could help you a bit, I don't know...I wish I had more advice to give!

Anyway, keep us posted...And try your best to hang in there!!!

Take care,

meg

How have you been doing lately samara? I've read some more about people living with no jaw joints and doing okay. What is the possibility that they could balance your jaws (muscle, ligaments, etc.) and you could live without the actual disc(s)? I'm just throwing something out at you since I don't know if anything will work sadly. I'm mad at the way you were treated from the beginning of your diagnosis. Similar to me in that they just slapped braces on me without trying to control the pain first (but much worse). True, that was 25 years ago and they knew less than they do now (which is not as much as it should be), but grrrrrrr, it would seem like conservative treatment should always be the starting point (but don't use the word, "conservative." something like the first step or whatever).

I hope you are as well as can be.
Carol

Hi carol and everyone else,

just to let you know I had a bit of a set back with my right side on sunday night, it just popped out and wouldn't go back in, had to take a trip to a and e , they gave me a painkilling injection and manipulated the joint back into place, not nice I can tell you, I have an appointment with my surgeon next wednesday for my left side (first steriod injection which I am dreading) and an appointment on 10th may for my right side, the emergency department were concerned that it just popped out on its own ie no trauma to the area, but after looking at my notes they were a little less concerned as you all know with tmj, the joint just does as it pleases. It's still feeling really loose and wobbly, but the pain has settled down to a steady throbbing which I can just about handle. I will let you know how I get on with my scalpel happy surgeon next week.

So everyone take care and chat soon

samara

Wow samara,
i can't imagine having the my jaw pop out to the point of needing to go the er. That's awful. Did they also give you a muscle relaxant before manipulating the jaw? How's your pain level now?

I've been doing pretty good. I've had a few flare-ups from having to use my shoulders too much (wheel chair and crutches). I can get around now okay on a hard walking cast but can't drive because it's my right foot that's broken. And then I can't stand for too long because of my bad left knee. I feel like i'm falling apart.

My tmj has been acting up today for some reason. I have taken a muscle relaxant so if there are lots of mistakes in this posting, please forgive me. My eyes have a hard time focusing, but my tmj is relaxing. Maybe I should take a nap.

Definitely let me know how your surgeon appointment goes. Research whatever he says he wants to do really well before doing anything. I think you should mention to him about needing your jaw to be balanced when it is working (eating, talking, etc.) i'd be curious to know what he thinks about that.

Take care and watch your posture.
God bless...
Carol

I thought I would give you a quick update with regards to appointments, treatments etc. Last week was most traumatic, I had my first steroid injection into the void that used to house my tmj, it was absolutely terrifying, I am a blood donor and ok with needles but this thing was huge, they gave me a couple of local anaesthetic jabs first, but that didnt calm the nerves, the chair was shaking, I felt like a 5 year old again in the dentist's chair !! The needle went in a lot further than expected and it also took a lot longer (maybe just felt like an eternity), but thats it over until 24th now. This week, I saw my surgeon with regards to the right side of my face, they took some x-rays on wednesday, but asked me back the next day for an ultrasound. After some discussion they have decided I must have a ct scan, which will happen in the next few weeks. I have told my consultant that I do not want any more surgery, so he knows my feelings on that subject.

The clicking and cracking is becoming much more audible, my colleagues run shreeking out of the office when its real loud haa haa, as for the pain, its getting a lot worse and also the tight feeling is happening again, as if your whole joint is a tightly wound ball of rubber that just wont budge. I have a new symptom, my ear feels blocked most of the time like there is water in it? Strange? And also my neck and shoulder hurts most of the time, also when I have to look upwards ie stretch my neck my joint pops out of place? Have your heard of that before?

Anyway enough of me rambling on, how are you carol? How is the foot, a whole lot better I hope.

Well take care and chat soon
samara from scotland

ps hi to all my other fellow sufferers, chin up (unless you're like me and your joint pops out) keep positive, cos its the only thing for it !!

[quote="blondemaggie"]sockmonkeyl,
so, I am thinking of seeing a world-renowned tmj specialist in jersey, that i've heard a lot of good things about.

Is it possible for you to post the name of this specialist on here or pm the name to me? I live in nj.

Thanks!

Hi samara, meg
i'm due to have a tmj replacement in august. Its a tmj concepts one, made from titanium, and a cobalt-chromium-molybdenum alloy, plus some plastic as well. I had to have allergy tests, and i'm allergic to chromium, so they're going to have to leave that bit out, replace it with something else. Just thought you'd like the info that they can adjust what these things are made of to suit the individual. All the stories i'm reading about surgeries are putting me off. I've also got to have an osteotomy on the other side to realign my jaws into their correct position. Any thoughts?
Mel

I hope all goes well for you in august, unfortunately I was not offered an allergy test, and thats where it all went wrong, my body rejected the joint. I have had 2 failed surgeries and the removal of the titanium joint last october, so I am not the person to talk to about success stories sadly. I am having steroid injections on the left side and am awaiting a ct scan for the right side, but I have decided no more surgery. If you want to know anything with regards to the surgery or post operative recovery please feel free to ask.

Samara

ps I am in the uk also, in scotland to be more precise.

Hi samara,
i would like to know what the surgery and recovery is really like. Sorry you've had such a bad experience. I can recommend my surgeon mr speculand, who works in birmingham, he seems to know what he is doing and is very experienced in this type of problem. Still, I won't really know until he's done this major op. Tmj problems aren't easily solved I know, its great to hear from someone who has some idea what its like. Whats your next step? Also, how is it to live without a tmj at all?