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Old 01-31-2009, 02:54 PM   #1
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Unhappy TMJ Joint Replacement Surgery is not an answer

Hello, everyone.
Most days, I stay in the background and read posts by members.
In October 2005, I had a bilateral total joint replacement of the TMJ's. I was 31, the day of the surgery.

I didn't go into the surgery thinking my pain would go away. But, I also didn't think it would get worse and more symptoms to appear.

A couple of weeks ago, my pain doctor decided to order a CT scan of the joints. My surgeon was hesitant to do so.

The results indicate there is no advanced reabsorption issues. The joint seems to be intact. But, the results are vague and there is talk of sending my CT scan out of state for review.

Here's the kicker. There is a 1.2 cm ossicular fragment in the left joint space. This may explain some of my symptoms.

Beyond the severe pain that has me on Roxicodone everyday, I've had hearing loss. I've never had hearing loss, prior to the surgery. My surgeon always seemed to dismiss it, saying I just needed my ears cleaned. Yep, my ears just needed to be cleaned. Well, I did some research on my own, regarding the test results.

Ossicular refers to the ossicular chain...of bones in the ear. The only way those can break is from trauma. Hmm. The only 'trauma' I've had was the surgery.

I also have vision loss. Without notice (mostly the right eye), my vision goes out.

My surgeon doesn't seem to want to do something about this, which will lead me to have to seek care out of state. He is the only one who does the surgery I've had done in my state...that is covered by my insurance.

I still can't feel portions of my skull, since the surgery. And, the mandible...oh my, can't even think about touching it..the pain instantly makes me cry.


What do you guys think "ossicular fragment measuring 1.2 cm in joint space" means?

To those of you considering a TMJ joint replacement surgery...please..please consider something else. If there are no other options, do research. Read scientific journals. Go to the FDA's website and research.

Once you have the surgery, there is no going back. And, doctors begin to shy away from you. I still can't find a dentist to clean my teeth. Emergency surgery had to be cancelled because the anesthesiologist didn't feel comfortable putting the tube down my throat (because of the joint).

I've never felt so shunned in my life. And, trying to find answers to my symptoms is even worse.

I am resigned that my pain will never go away. I am resigned that I will need to have the joint replaced, at least a few times, in my life.

And, I feel that surgery (my 14th) is looming again..because of the 'fragment' in my joint area....

It is a struggle...to say the least.

Meditation

 
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Old 01-31-2009, 04:18 PM   #2
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Re: TMJ Joint Replacement Surgery is not an answer

Hi Meditation,
I just feel like crying after I read your post! Thanks so much for writing this while being in your situation. I hope you will prevent other people from this kind of nightmare.

I wish I could suggest anything to you to feel better.
I am sure you meditate according to your login name. At some point this was all I could do: reading different spiritual teachings and finding meaning in suffering. It was certainly helpful as there was no other help for me then from constant pain.

It's probably a silly question: is there any way that your jaw can somehow recover from all this? What is the state of your teeth? Can you eat normal food?
Will be praying for you, for sure!

 
Old 01-31-2009, 05:25 PM   #3
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Re: TMJ Joint Replacement Surgery is not an answer

Hello Meditation - I do remember you as you were one of the first few to answer my questions when my tmj began abruptly almost 5 yrs ago. I figured you were monitoring the boards in the background b/c you have been kind enough to share your story and warn about the many pitfalls many of us succumb to in getting our problem - be it muscular or joint related - treated and resolved. I failed to follow your many words of wisdom somewhat out of my own ignorance and somewhat out of desperation due to the severity of my pain and naively trusting the dentists I went to and I must say things just went from bad to worse at one point but I have made small steps towards improving over the past year.

I just wanted to wish you a warm welcome back and best wishes that you are able to find the best care and surgeon, as you have certainly earned it. Too often many sufferers are advised surgery is their only option to being pain free and are often informed that the likelihood that surgery will make things worse is remote - so thank you for once again reminding members to consider all their options and weighing the pros and cons before deciding on any surgery.

Although I have no exprience with joint surgery I was wondering if you had been to an ear specialist (surgeon) as it sounds like the occular area of the inner ear has been infringed upon or damaged (if not fragmented) by your joint replacement surgery. I am wondering if the fragment is actually a broken stapes or part of the inner ear apparatus now wedged within the joint space - possibly causing pain akin to what a splinter in the skin inflicts - not to mention resulting in your current diminished hearing capability.

Last edited by Thelma-Louise; 01-31-2009 at 05:26 PM.

 
Old 02-11-2009, 05:11 PM   #4
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Re: TMJ Joint Replacement Surgery is not an answer

Still Hope,
Thank you. I do appreciate your prayers.
I got back from the surgeon. He doesn't think the fragment is anything. Of course, if it was something he did, would he admit it was something? I am not saying it was anything purposeful. I just want answers.

He doesn't know what to do. I would ask questions. I can't tell you how many times he said, "I just don't know what to do".

According to him, the joint is 'mechanically' ok. And, I know I should thank God for that. Please don't take this as I am being ungrateful. But, the pain is torturing me. Many times, my memory has gone. By 4pm, the pain has broken me.

Believe it or not, he did have some definitive answers..regarding my teeth. Other than staining and tarter (because I can not find a dentist who wants to touch me), my teeth are perfect...including my bite.

It is extremely painful to eat, though I do eat normal food. I don't eat normal food all the time. Some days, I don't eat at all (I know not good for me, but the pain is just too overwhelming).

I have an appt. with my fav doctor of all time. He did one of my surgeries. I credit him for 'curing' my TMJ...his surgery gave me a 10 year break from this madness. Of course, I bit on the metal screw and it ruined my joints.

I don't know if he can physically do anything. But, I am hoping he can send me somewhere. I wish he could have done the surgery. But, he doesn't do total joint replacements (and don't think I didn't cry when he told me this).

I want to discuss the CT scan results with him and my symptoms.

I've been doing a lot of research the past couple of days. Due to the mandible pain spreading...there is a possibility that I could have an infection in the bone.

Just brainstorming right now...hopefully so my old TMJ doc can help.

I am hoping someone can do exploratory surgery and biopsies for a more complete picture of what's going on. I know that I can not wait a year (the surgeon said he would eopen me up in a year...if I am still in severe pain). Yep, that's what he stated. If I am still in severe pain in a year, he'll open me up.

Only, I don't think I can make it a year...with this pain. So, now, is the job of finding that doctor who will open me up.

Again, thank you for your prayers. I do appreciate them.

 
Old 02-11-2009, 05:15 PM   #5
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Re: TMJ Joint Replacement Surgery is not an answer

Thelma-Louise,
Thank you for the warm welcome, back.
It's not that I don't want to help others....I guess I've stayed in the background because I've become such a loner, these days. I wish I could help others. But, even taking care of me is difficult most days.

I will be seeing my previous oral surgeon in a few days. Once I get his take on it...I will get to an ENT doc.

I am thinking the same thing as you. Now, I just have to get an experienced doc to do all the tests to determine if that is a possibility.

I am not saying I regret the surgery. But, I do know this......I question having it, sometimes.

I saw my surgeon this week (the one who did the replacement). He won't consider taking them out. And, he won't consider a rib graft. I do understand the reasons behind this.

But, at the same time...........I don't want to be on painkillers the rest of my life. And, I sure would just like to have a break from it.

Now, that's gonna be a tall order.

How are you doing, these days?

 
Old 02-12-2009, 07:27 AM   #6
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Re: TMJ Joint Replacement Surgery is not an answer

Although I am certainly better than when my problem started in 2004 I have yet to really find any real answers to what caused it and how to treat it, so I am frustrated with that apsect of it and unfortunately along the way my bite and teeth have been practically destroyed by the so-called tmj dentists I went to and rebuilding it seems to be taking forever and I am doubtful it ever will be restored. I am grateful that intense cranio-facial pain and pressure I was living with it has eased up quite a bit but I am still struggling with facial spasms along one side of my face that seem to become more frequent and pronounced the more I am orally active - speaking, eating, etc.

I am not sure an ENT will be able to help you but they may be able to point you to the right type of dr - I think you may need an ochlear or occulular specialist /surgeon.

I wish you well and that your appt with your previous tmj dr goes well and is encouraging.

 
Old 02-18-2009, 09:51 PM   #7
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Re: TMJ Joint Replacement Surgery is not an answer

Hi Mediatation, Just wanted to say Hi and thanks for your informative posts. I am so sorry for everything you are going thru, and im sure some kind of break will come your way. just a question, have you tried any natural-type cures, like certain kinds of fish oil that stops imflammation (thus stopping pain at least a little)?
You are in my prayers and please keep us updated when you can. <3
Mandy

 
Old 02-19-2009, 12:50 PM   #8
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Re: TMJ Joint Replacement Surgery is not an answer

Quote:
Originally Posted by meditation View Post
…Ossicular refers to the ossicular chain...of bones in the ear. The only way those can break is from trauma. Hmm. The only 'trauma' I've had was the surgery.
I would suggest that an unidentified infection may have caused this trauma and that the bone was not broken, but “eaten” away. Some infections eat bone, muscle, and cartilage.

An infection may also explain your hearing loss, vison changes, tmj symptoms and the escalation of symptoms after surgery . An infection caused by borrelia burgdorferi affects joints and TMJ is the fourth most commonly affected joint in the bodies of people harboring these infections. For that reason, some specialists think it should be included in the workup of people complaining of TMJ pain and symptoms. From what I understand, the b. burgdorferi spirochetes set up housekeeping in the salivary glands and the problems spread, resulting in the symptoms you describe.

Surgery, injury, stress, and steroids can escalate symptoms in people who have unidentified infections going on…so the fact that your symptoms have gotten worse is not a surprise. If you are infected by b. burgdorferi (and/or its coinfections), the treatment would have been antibiotics, not surgery.

Last edited by bethsheba; 02-19-2009 at 01:21 PM.

 
Old 04-15-2009, 04:35 AM   #9
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Hi to everyone! I finally found a TMJ "support" group, I can't believe it.

Hello,
My name is Lisa. I'm 43 yrs old, 44 in May. I'm a divorced mother of a beautiful, sweet 13 yr old daughter. I live in a small borough called Malvern, PA. I have been reading many of the posts here and finally feel that I'm not alone fighting this battle we call TMJ/TMJD. I always knew others had it, but to read real life stories mirroring the same things I have been dealing with for the past NINE years..as have all of you, I can truly say I have been brought to tears...of happiness to find you all here!

Please allow me to give a condensed rundown of my journey for you all to read. It is a long story, even in it's abridged format, so get comfy!!
In 1999, I began having pain in a molar on the left side of my face...lower jaw. I went to my dentist. He said he needed to re-do an old root canal. No novacaine or sedation of any type...said he had to know if any live nerve endings existed to explain my nagging pain...there was. So painful that I pushed him away by reflex and down with him, went a tray of sterile instruments! I was in tears. Thus began my journey into the agonizing world of TMJ. My dentist could find no cause for my teeth being responsible for the pain I was feeling. I saw ENT's, oral surgeons, chiropractors, and MD's only to find continued pain, frustration and still, no relief. Finally, my dentist referred me to a TMJ specialist, who he room-mated with in college some 30-ish years ago. Needless to say, I was diagnosed with TMJ immediately and began more pain meds. I had a few in-patient, minor surgeries to debride the left TMJ, as well as office procedures too. In January of 2000, I began school to become a massage therapist (CMT)..the
11th of January, to be exact. On January 14th, 2000, I had a car accident. T-boned a woman who cut me off by trying to shoot the gap and make a left hand turn while her light was red and mine was an extended green signal. The bucket seat in my Chevy Beretta, broke free from the track and I was catapulted into the windshield while seatbelted in, at 35-40 miles per hour impact! Of course, by natural reaction, I turned my face to the right to try and avoid a frontal face bashing! To top that, I was on the way home from a visit with my OMS doctor. (I know I need not define OMS to you..lol!) My car was totaled. My daughter was only 4 then, and in the middle backseat in her car seat. Not a scratch on her..thank God.

We were taken by ambulance to the local ER. No one X-rayed my face..and I told them 50 times if I said it once, that I was a TMJ patient, now with worse pain than I had prior to the accident!! When I got home from the hospital/ER, I made 3 phone calls..1...called off from work (I worked PT as a waitress when I was still married) 2..auto insurance, and 3..a LAWYER..no lie either. I'm not an ambulance chaser, just simply protecting myself in case the other driver tried to pull a fast one. Little did I know that 9 years and 2 lawyers later(btw, I lost the case), I'm finally getting the surgery I need, as my natural disc was torn, and none of the surgeries to save it worked. So I had a Silastic disc put in. My body rejected it, along with another attempt using cartiledge from my ear...rejected! So I have no natural disc left. I do have a second artificial disc presently..but that was to be temporary..it's been in for over 2 years, and has moved out of place with the constant shifting of my jaw. I opted not to go in to remove it, believing a final surgery was in my near future. Wrong answer!!! With the passing of the years, 12 more surgeries,(2 or more were emergency admits for cellulitis and a clot that formed behind my left eardrum) add to that a failed law suit later, having to go on Medical Assistance and not being allowed to work per my doc's orders..here I am..pending my 13th major operation for a total L TMJ replacement with pins on the right to stablilize/anchor the prosthesis. My surgeon is the best..one of only 50 docs who perform this procedure in the US, so I have been told. People come from all over to see him. In his office, I have met patients from Ohio, Kansas, Vermont and Canada! I think that says alot about his reputation. He has 7 children and is the sweetest doctor I have met, particularly for a specialist. He even gave me his cell number to call him if I need meds or to be seen on a Saturday, outside of office hours mind you, when I can't get an appointment on the first Wed of each month. He is a very busy doctor going between 2 city hospitals (both teaching hospitals at that) and 2 office settings. He really goes above and beyond his call of duty for his patients. I'm glad to be one of them!
Ok, I think I have told my entire story, and then some.

I'd love to hear feedback
.
I really feel like I have a TMJ family now, and it feels good to know all of you understand how I feel and what I have been through. I am so happy to have found this message board.

Take care, each and everyone here. We will get through this with the help and support of one another. Thank you so very much for reading my story..if you made it to the end w/o dozing off..lol!

I have tried all else there is available to me. This is my last shot at being pain free and resuming a normal life. Been on pain meds, spasm meds, not muscle relaxers though, stronger meds, as are my pain meds. You all know my scenario..start out with either Percocet or Vicodan and then that doesn't work..so we're given something stronger, and now, for me, that's sarting to not work as well. But I'm scheduled for surgery on April 30th, 2009. Just had PAT's yesterday. I pray the "after" will be recovery pain only..no rejection, infection or any other complication. I was told too, I will be going for PT..for my mouth!

I just want this to be over. The pain, spasms, migraines and dental issues( fractured teeth, teeth that have turned around in my gumline from hiting the wrong way when I chew or clench, resulting from TMJ. I read an article online that lead me to this board..and I have experienced every symptom, cause and effect to my person the story listed for TMJ /TMJD. I'd swear I wrote it myself!!

But to read real life stories from all of you from all across the map, is comforting..to know I'm not alone in the severity of TMJ I suffer from. The whole ordeal of running my life around pain meds and doctor appointments, procedures,the TMJ itself, the pain, the insomnia..you name it..I've been there too.

Am I scared? Hell yeah, I'm terrifed. But to me, having this surgery, outweighs being left like this. So, I'm praying for a flawless operation and easy (as can be expected) recovery and then the PT process.
I finally feel like I can relate to people who have been through the same hell as I have..and are still going through it. No one knows until they have been in our shoes what it is truly all about to live with TMJ/TMJD.My heart goes out to each and everyone of you. If I can offer any words of comfort, answer any questions or comments..please feel free to write me, through this board. I'd love to speak with anyone..or listen, whatever it takes to help or comfort someone here.

Thank you all so much for being here. I feel as if I know you all already! God Bless! Write soon. I want to know more about you all!

Sincerely,
Lisa

Last edited by moderator2; 04-15-2009 at 12:05 PM. Reason: please do not post your email address in the public forums - instead, use the private messaging system

 
Old 04-16-2009, 11:36 AM   #10
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Re: TMJ Joint Replacement Surgery is not an answer

Mediation,
I am so sorry the bilateral TMJ Concepts have not worked for you. You are living my biggest fear that the pain would only get worse after the surgery. I hope you find relief and get the answers you deserve.
As far as TMJ replacement surgery...it is not for everyone and should not be taken lightly. I am going round two with the TMJ Concepts bilateral on July 1. My only other choice at this time is to be wired completely shut until....when ever that may be and I am not ready and do not want to live like this so I am going with the implants again. I tried to go jointless and was able to do so for almost 13 months with very little function and pain that was some what controled with pain meds but my bottom jaw slide so far back it began to cut off my air way and I could no longer swallow without choking so either arch bar wiring until...or the TMJ Concept Implants. I hope all goes well for you!
Take Care!
Shirlett

Last edited by Shirlett; 04-16-2009 at 11:39 AM.

 
Old 05-11-2009, 10:32 AM   #11
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Re: TMJ Joint Replacement Surgery is not an answer

Dearest Meditation. I am so amazed at the courage I sense in between your lines and the fact that you still have a sense of humour. I can never understand why in this day of digital precision it is not possible to repair jaw joints. Are we just 10 years away from a solution ? You keep hoping that some surgeon somewhere has found a new way. I live in U.K. and have very severe jaw problem which is affecting muscle chains in my whole body as well as head. I totally seize up in my whole body regularly.
Someone here recommended I see Piper, who has developed a new fat graft procedure.
You are so young to have had so much surgery. When you had the surgery in 92 were you just in your teens ? I cant understand why such extreme surgery was done at such a young age. I was interested to hear about your favourite tmj doctor who used cartillage from the ear are you able to mention his name here ? Really bad luck about that screw. I experience some deafness in my left ear which is my worst joint it is the pressure of the joint on the ear , it comes and goes. My feeling is that the bone fragment in your jaw joint is a little bit that got left behind from the joint itself. Do you have titanium implants? I hope the pain subsides for you as the joints heal Thank you for communicating

 
Old 05-13-2009, 07:20 AM   #12
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Re: TMJ Joint Replacement Surgery is not an answer

Dansk52 - I'm sorry to hear your story about TMJ and the chain of muscle spasms that affects the rest of your body. I, as well as a few others, suffer from similar symptoms. This is a rare form of TMJ indeed and I'm always intrigued at exactly how it developed in each case.

Just out of curiosity, have you had any orthodontics or facial/jaw surgeries earlier in life before this problem developed? Did you have any joint issues before the problem developed? Did it develop gradually or suddenly?

In my particular case, I had a long history of a popping left joint and bruxism. Currently, MRI's show complete anterior displacement without reduction of my left TMJ and medial displacement with reduction of my right TMJ. I also have some neck abnormalities which a lot of doctors think are contributing. I'm planning on having open joint surgery soon to address the left TMJ issues as well as lower jaw surgery to "make more room for the discs". Surgery is a risk, but after suffering with this for almost 10 years now I think it is a well calculated risk.

 
Old 05-13-2009, 09:15 AM   #13
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Re: TMJ Joint Replacement Surgery is not an answer

Maxwell I posted a reply to you in another section before reading you most recent post.

I started to develop tightness in my jaw especially on left with clenching I then had a catastrophe where after a root canal a dentist did some occlusal grinding to my lower left molar cusps this was 10 years ago it affected my whole body posture increased the spasm and made it difficult for me to hold my jaw.

I pursued various dental treatments : wore a lower michigan splint for 6 months which did me no good whatsoever then had 3 years treatment with a tmj dentist which I wont go into just now but I will at some point if you are interested ,at the end of this treatment I ended up much worse.

My MRI scans are somewhat similar to yours : Left side is the worst with anteriorly displaced non reducing articular disc which has lost its normal configuration. the condyle has osteophytes and is beaked with eminence degenerative change. The right condyle is not so flattened but the disc is anteromedially displaced.

I also have some wear and tear on neck vertebrae. But basically I was managing until I had dental interference. Leading a normal life, I suppose I should be grateful for that because it has been hell since, like I know it is for many of you.

Yes The whole body TMJ muscle spasm illness affects a minority I know a few. I am glad you wrote. I have been to many specialists, I have not found an answer. The more of us that communicate the better.

I have put off having an operation so far out of fear that I might make things worse.
But leaving things as they are certainly is not helping. I would be interested to know more about the kind of surgery you are planning to have.

 
Old 05-13-2009, 10:36 AM   #14
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Re: TMJ Joint Replacement Surgery is not an answer

Wow, finally a person with a history similar to mine. For the record, you are the first person I've met with similar history and symptoms for this bizarre problem. Did you have a pop/click in your joints at any point in your life?

To correct my last post, the pop was in my right TMJ. It started as a small click around age 10 and grew into a huge pop by age 20. I was given a hard plastic splint at 18 which did protect my teeth. However, I think it did contribute to this problems. The muscle problems started around 19-20. The muscle problems were getting extremely bad one summer and the pop totally went away leaving me with extremely quite joints. However, the muscle problems got EVEN WORSE when the pop went away.

I have been in the same situation ever since. I don't doubt that stress and clenching/grinding may have had a lot to do with my problem because my bite was really worn down from an early age.

In 2006, I had orthognathic surgery (le forte osteotomy) where they moved the upper palate down. This made my bite "perfect" and did help the muscle problems a little bit. However, there was about 80% of the annoying muscle spasms still.

Per my last post, my problem became extremelly debilitating and I my life basically fell apart after the braces came off in 2007 and they glued an internal retainer to my inner bottom teeth.

In early 2009, the retainer popped out and all of a sudden I got a little better (back to the 80% muscle spasms level I had when the braces were on). So, I'm once again functional and able to be pretty productive at work. However, I still have lots of TMJ muscle tensions in my head, neck, back, and stomach that leaves me feeling like the energizer bunny sometimes, and other time overdrowsy.

...That's my story. Class dismissed.

 
Old 05-13-2009, 10:48 AM   #15
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Re: TMJ Joint Replacement Surgery is not an answer

Tale End of Story....

So, while the internal retainer was making the problem worse, I panicked and started getting MRI's, Tomograms, went to a Craniofacial Pain Center in Boston which didn't help.

I also saw a well known TMJ surgeon in Dallas, TX a few months ago who gave me 2 options for surgery:

1) Repositioning the discs with mitek anchors (bilateral arthoplasty) with a lower jaw surgery to "make room for the discs" (bilateral ramus osteotomy). The left disc is so out of place that when it is supposedly put back in its proper position, my lower jaw will supposedly be 1/4 inch forward of my normal bite and need to be moved back via surgery (and later ortho). In a sense, the lower jaw surgery is used to find a new position for the jaw that is more compatible with the discs than my current positions. A potential drawback of the surgery is a permanently numb lower lip (50/50 chance).

2) Total Joint Replacement on both sides. You all know about this procedure. Notably, this doctor says he only does both at the same time and not just one. He claims that if you just do one, the imbalance or forces (the metal side being very heavy) will pull the other side out and damage it in a few years. Not sure what to think of that but that's what he said.

Unfortunately, good results are no guarantee with procedure #1 and I've heard numerous complaints about procedure #2 as well. One of the Dallas surgeons good friends, another oral surgeon, lives in Oklahoma and he has agreed to do procedure #1. This is much cheaper than procedure #2 and is mostly covered by my insurance because the Oklahoma surgeon is "in-network".

After nearly 10 years of suffering and a history of joint problems, surgery is a calculated risk I'm willing to take.

One other important note about my case -- other than displaced discs reported from an MRI, panoramic X-Rays show no bone loss whatsoever. I am still young (29 years), so perhaps this is why.

 
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