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TMJ Disorder -TemporoMandibular Joint Message Board
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Old 07-17-2009, 01:43 AM   #1
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Carey HB User
Smile Total tmj joint replacement @ 29yrs

Hi,
I was hoping to hear from anyone who has had a total jaw joint replacement by TMJ CONCEPTS? and what experiences did you have?

I used to be member here a long long time ago but havn't been back in a while.
I live in Australia and my tmj problems began 10 years ago when I was 19. since then I have had my left tmj disc removed 6 years ago as it was damaged beyond repair and it is now fused as a result of having bone on bone for 10 yrs. i only have an opening of 10 mm Because of this my right tmj has been compensating for the left side and doing double the work for this whole time. I have lived with chronic pain as well as trigeminal neuralgia and am on a cocktail of meds that now do not provide me with any relief as my system has become tolerant to them (over a span of 10 years). My oral surgeon has recommended a total left joint replacement as this is the last resort.

My right tmj is now dislocating more and more each day but since i have to get my tmj prosthesis custom made in America from tmj concepts, it comes at a price. It will cost me around $15,000 Australian dollars, which no insurance covers, and money I don't have, plus due to insurance constraints I cannot have the surgery for another 12 months. I am worried that having to wait this long my right side is going to deteriorate rapidly. my surgeon doesn't really want to touch my right side (do any surgery) as he is hoping once my left joint replacement is done, the right will settle down and return to "normal" function.

I am just hoping to hear from those out there who have had tmj total joint replacements and the experiences that you have had, as well as ANY advice.
Cheers,
Carey

 
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Old 12-08-2010, 07:18 PM   #2
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Re: Total tmj joint replacement @ 29yrs

Hi Carey,

I had TMJ Concepts put in by Dr. Larry Wolford and I am suffering lots of complications including loss of ROM to 7mm, pain, and bite changes. Presently I have an FDA complaint out on the prostheses that TMJ Concepts is investigating. I do have to admit Dave and Eric at TMJ Concepts have been great in trying to figure out what is going on. My local doctors want Dr. Wolford and TMJ Concepts to prove that the plastic piece of the prostheses is not broken. They strongly feel this may have happened. I recommend anyone thinking about having any joint surgery to contact Terrie Cowley at TMJ Association or check out there website to gain further information. I wish I would have done this before my surgery. There also is an article out of the relationship between TMJ prostheses and cancer which is pretty scary. My biggest advice is to obtain both pro's and con's of the surgery and speak to TMJ Association to hear the outcomes of the majority of patients including Terrie.

Karen

 
Old 12-09-2010, 08:06 AM   #3
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Re: Total tmj joint replacement @ 29yrs

carey....sorry to hear what you are going through...look on the great tmj doctors threads to see if there is a NM dentist in your area...they may be able to help...other than going the surgery route. It's worth a shot, IMO. I am so sorry to hear the pain that you are in. I hope you get relief soon!

 
Old 12-09-2010, 02:27 PM   #4
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Re: Total tmj joint replacement @ 29yrs

Carey,

Thank you so much for you suggestions. Right now I am just so hurt as I feel abandoned by a surgeon who is not only world-renowned, but who I honestly felt was very compassionate. His office staff is who I am the most angry at right now, but also concerned that my surgeon is trying to abandon me. I have been through so many failed surgeries and just no where to turn right now.

Karen

 
Old 12-26-2010, 08:56 AM   #5
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Re: Total tmj joint replacement @ 29yrs

Stumbled on this site today after a Google search on TM Joint replacement and pain.

I had a total replacement (with a TMJ Concepts product) three years ago, by Dr. Wolford. I have never regained range of motion since surgery, and still clench/grind at night. I had several complications post-surgery and spent over a month in Dallas before I was cleared medically to leave. I also have numbness in right side of my lower lip (like it never "woke up" after the surgery).

The past month or so, I have had a tremendous amount of cheek pain on the right side of my face at the implant site, getting increasingly worse, as well as numbness and tingling all over that side of my face. In the past, when I have contacted Dr. Wolford's office to let them know that I am experiencing pain, the response has always been, "That's impossible." End of story. Well, it may be impossible, but that doesn't mean it isn't happening, or getting worse. Does anyone have any similar experiences or advice? I am particularly interested in hearing from Karen, if possible, since she also went to Dr. Wolford. Thank you.

 
Old 12-26-2010, 09:16 AM   #6
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Re: Total tmj joint replacement @ 29yrs

I am so sorry to hear you are having the exact same complications I am having. The first thing you need to do is to file a complaint with FDA for your TMJ prostheses becasue if enough of us complain, and there are a few others, they will at least begin an investigation. < edited >

I am really surprised to hear this because I have been told by Dr. Ws office that I am one of the only ones that have had this complication following their joint surgery. There are other patients of Dr. Wolford that are also experiencing great complications and I will also put you in contact with them. No, what you are experiencing is not normal and is a post op complication and don't let anyone tell you any different. My doctors here have halted all care and believe the plastic piece of the prostheses may be broken, which is rare, but can happen. This can't be proven by x-rays unfortunately, but my doctors here want Dr. W to prove this is not the case. You also need to probably contact TMJ Concepts which I did to let Dave and Eric know so they could also investigate further.
< edited > I hope we can both figure out what is going on and discuss further.

Karen

Last edited by hb-mod; 12-27-2010 at 03:58 AM. Reason: Please don't post personal info such as real name, email or phone.

 
Old 12-26-2010, 10:06 AM   #7
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Re: Total tmj joint replacement @ 29yrs

The one thing my dr. made sure I understood before surgery was that it was not for pain. In fact, the pain could be the same, or even worse after the fact. The bilateral replacement was purely for function. My bones were fusing together and eventually the whole jaw would be fused shut. Feeding tubes were not an option-I chose the surgery.

I hate that your surgeons weren't more upfront with you and that they are not helping you now. The fact that a surgeon would say "That's impossible" is crazy. We all heal differently. If you feel that you need to file a complaint-I would do so. Hopefully that will let your surgeon know that you mean business and you want him to take you seriously.

For me, the surgery was the best thing I could have done. It was done over 2 surgeries-one was 6hrs, one was 9hrs. I am still in the middle of rehab(stage 2 was done in Aug). I have an autoimmune disorder which is what made the surgery necessasry in the first place. Still have pain, but I have pain elsewhere so I see a pain management dr which helps. I hope you guys find some relief. Jaw pain bites!

 
Old 12-26-2010, 10:26 AM   #8
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Re: Total tmj joint replacement @ 29yrs

I actually went in to my total joint surgery because of loss of range of motion which was at about 15mm before the total joint surgery. I am now at 5mm. I did realize their were complications, but never imagined I would be in worse shape following the surgery total joint surgery with Dr. Wolford in October of 2009. I actually had a total of three surgeries with Dr. Wolford including Mitek Anchor surgery in May of 2008, and Lefort 4-piece/BSSO in October of 2008. The Mitek Anchor surgery failed and I am unfortunately also facing a relapse of the upper jaw surgery and possible failed total joint surgery.

 
Old 12-26-2010, 12:04 PM   #9
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Exclamation Re: Total tmj joint replacement @ 29yrs

Here's an interesting twist: In doing further online research about this today, I ran across a site which poses the question about the potential cancer link between TM replacements and salivary gland cancer. Does anyone know anything?? I have a large lump in my neck, on the right side, just under my jaw. I saw an ENT, who thought it was a salivary gland infection. An infection was ruled out, however, and I am waiting further testing (I have an MRI scheduled for early January). I am trying not to worry too much, but the lump in conjunction with the increase in facial numbness/tingling, and increased pain has me jumping out of my skin. These things could all be coincidences, but stil...

 
Old 12-26-2010, 12:20 PM   #10
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Re: Total tmj joint replacement @ 29yrs

I do not want to alarm you, but do want you to contact Terrie Cowley, president of TMJ Association, and ask her about the article she just posted not too long ago about TMJ joint prostheses and cancer. Tell her that Karen referred you who is Dr. Wolford's patient. < edited > I am wondering if you are just not having maybe an infection, but it would be wise to contact Terrie to let her tell you more about some of the complications with prostheses along with a recent case of the relationship between prostheses and cancer. It seems she stated for the patient she recalls, had cancer in the same area as the prostheses. She knows all about my complications with the prostheses and is not all all surprised or too happy.

Last edited by hb-mod; 12-27-2010 at 03:59 AM. Reason: Please don't post personal info such as real name, email or phone.

 
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