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Old 09-15-2005, 10:50 PM   #1
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Lightbulb Looking for information on TMJ Concept Replacments

Hi Everyone!

I have been away from the board for quite some time this summer. I have been busy with other things surch as gardening and sewing. I also got to visit New Orleans early this summer. It was such a joy.

I went to see Dr. Larry Wolford, in Dallas Texas this summer for a scond opinion regarding my continuing pain, which became worse after having TMJ Arthroplasty in 2003. I had to go on a lot of medication after my surgery due to such great pain. It started six weeks post op and continued to get worse as time went on.

In 2004 I wen to Mayo Clinic and did not receive much information or help.

In July of 2005 I went to see Dr. Wolford, and he told me that I need a bilateral total joint replacment with the TMJ Concepts. I have severe bilateral arthristis (most likely rheumatoid). I am very displaced even after spending a huge amount of money for TMJ Arthroplasty using the Mitek Anchor.

I also grind and clench my teeth at night. I don't know why I started doing that in my sleep. I didn't when I was young.

Right now I am dealing with insurance issues. I live in Missouri and it is a state that does not mandate that tmj be a covered like other joints in the body. So on top of all my other problems I am trying to find a way around these insurance issues.

Has anyone heard of any success stories with the TMJ Concepts? If so do these patients also have a clenching or grinding problem? I was told that I would need to continue wearing a splint at night after the replacment to help protect the joint. Also, the doctor told me that the medication Klonipin/Klonipan is effective in decreasing bruxism while sleeping.

I can see how the joint replacment may work for a person that does not clench, but I am worreid about clenching with the artificial joint. If you read the TMJ Concepts web site it is contraindicated for people with a clenching problem/bruxism problem.

Has anyone had a succesful operation and still posting. If so what is the recovery like? Did you have to do post operative physical therapy? What type of diet will you be on post operatively? Any information about this surgery pre-operative and post-operative would be greatly appreciated.

I would like to get off medication and reclaim my life, but I don't want to be worse after surgery like I was the first time. I don't think I could handle being worse.

 
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Old 09-16-2005, 12:10 PM   #2
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meditation HB User
Re: Looking for information on TMJ Concept Replacments

Michelle,

I am scheduled to have a bilateral total joint replacement using the Total Concepts implant on Oct.5 2005. This is my first total joint replacement, and hopefully my only one.
I have heard good things about this implant, which is the primary reason why I chose this one...I've heard nightmares about the Christensen. Horrible stories.

Once I am up and moving around, I will let you know how it went. For me, my insurance company was very slow. I've heard it take years to get it approved. I yelled and screamed....it was a covered procedure, my condition warrants it...so approve it. They approved it in less than three months thank god.

I just had to become my own advocate...and, it worked.

But, anyway, I will let you know the progress as it happens.
Take care

 
Old 09-16-2005, 03:00 PM   #3
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Re: Looking for information on TMJ Concept Replacments

Hi Michelle:
As you already know from my posts on the board I have not had any surgeries but I just wanted to let your know that you are in my prayers.
Hugs,
Tiffany

 
Old 09-17-2005, 09:06 AM   #4
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Re: Looking for information on TMJ Concept Replacments

Michelle,

I am still grinding at night even when I had BOTH implants in. As far as the clentching goes I have had to retrain my self to press the tip of my tounge to the roof of my mouth. VERY hard to clentch in that position. As far as diet goes after surgery..well I was wired so I was on liquids. I do know others who were not wired afterwards and it is my understanding it is the doctor and on a case by case basis. As far as PT I did it myself at home on my couch. Once I was unwired I was very tight and had to start from scratch on learing to open and close my mouth. It was five months after my implant surgery before I had my FIRST steak. I STILL have problems biting into an apple but I DO NOT have to peal it to eat it. Old habits are HARD to break. I woud say I only eat food I REALLY have to chew four or five days a week and I still prefer at times to eat soft foods (less energy to eat). I bought and Still use on bad days...a Barney toddler tooth brush and a wide but flat baby spoon. After I was unwired when I ate, what I could get on the spoon is what I put in my mouth and used the toddler tooth brush JUST SO I could say I WAS BRUSHING MY TEETH!!

Mediation, you need to ask Dr. Dolwick if you will be wired since he DID wire me shut ummmmmm four time now.

Shirlett

 
Old 09-17-2005, 11:22 AM   #5
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Re: Looking for information on TMJ Concept Replacments

My surgery is still on for oct.12. I was told there was a possibility of it being on the 5th; but, it remains on my birthday.

Shirlett,
I am under the impression my jaw will be wired shut, for a while. How long were you wired shut?
thanks
meditation

 
Old 09-17-2005, 11:43 AM   #6
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Re: Looking for information on TMJ Concept Replacments

Thank you Tiffany, Meditation and Shirlett for the support and information on the Concepts. Please keep me posted on your progress or any infomation that you think will be helpful.

 
Old 09-17-2005, 07:16 PM   #7
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Re: Looking for information on TMJ Concept Replacments

Michelle,
Just wanted to add a couple of things....forgot. But, of course, being weened off all my meds is playing with my mind.

There is a great website for TMJ concepts...can't give the name...but search for it. It has a lot of great information. Also, try calling them up. They are great with information, they have helped me tremendously. They spent hours on the phone with me. It was awesome.

Also, see if you can get articles about the success of such a surgery. The journal of oral and maxilliofacial surgery is an awesome source. I had to pay for some articles; but, heck...it helped me make an informed choice.

As soon as I am up and around, I will let you know my progress. If this helps someone, even just one person, then I am thankful.

For me, it has been a year and a half (almost) of hell. The pain has changed me. I am not the person I used to be and I am struggling with that. My body is tired of the fentanyl pain patch. The pain causes extreme nausea and vomitting. I've passed out. I am completely not able to focus at work. The pain is indescribable. I've given up trying.

So, my only option is this surgery. The screw which I bit into damaged my TMJ to this extent. No, I am not happy. But, I realize I have to do this to try to regain my life. I so much want to be the girl I was before 5/04. I miss her and will take this gamble...hey, isn't life a big gamble anyway .

Try as much noninvasive procedures you can. I always say this. I can understand the pain. Most of us on this board can understand, though all of our experiences are unique. Please, do not go through surgery UNLESS no option is left.

This procedure *the total joint replacement* is a very strenuous procedure. It is hard. It is rough. And, the chance of experiencing no pain is almost impossible. Just research. research. research. If you live near a med school, go to their library. Research all you can. Use the internet....when I went through this as a teen...it didn't exist.

Just take care and hang in there.
meditation

 
Old 09-19-2005, 06:15 PM   #8
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Re: Looking for information on TMJ Concept Replacments

Mediation,
I guess you did not read my last post to you...that was one of the questions I told you to ask Dr. Dolwick. He has wired me FOUR times now. When I had the implants put in I was wired for about three weeks. You are not going to be over at Shands alone are you? I know you have stated your family is not very supportive but someone IS going to Shands with you correct?

Michelle...I agree with Mediation 110%..SURGERY is the LAST option. I am still in pain. There is NO CURE OUT THERE TO MAKE YOU 100% PAIN FREE!!! The implants have broguth my pain level down to a point where I either do not pay attention to it or I can ignore it. After being in uncontrolable knee jerking, can not catch my breathe want to pass out pain for seven years...what I feel now is a walk in the park. I can function with the pain I have now. I was told by my Oral Surgeon that he could NOT make me pain free and his and what needed to be my goal was to get as much function back as he could for me and to REDUCE my pain to a level that I could live with. I fought for five years. I was the most anti surgery do not put ANYTHING in my body that did not come from my body person I knew.
I still hate surgery. And now I know it is because I am a control freak over my own body and thanks to the TMJ I can no longer have that OCD. In one month I have to make a decision to either put a new left implant back in or just wing it and see how long I can go with one implant. RIGHT NOW I am anti surgery and want to see just how long I can go with one but another part of me wants to have both sides in. And that would be the vanity side since the left side of my face has caved in due to there is NOTHING over there to hold my face up. Another thing with surgery is once you have that first things will NEVER go back the way they were. If I tilt my head back, both of my jaw lines look as if I have been attacked over and over as if someone was intent on killing me. Everyone's skin is differant and my scars really stick out. Yes, surgery works for a good number of TMJ people but not everyone. I know you said your doctor told you that you needed the surgery BUT YOU HAVE TO DECIDED THAT YOU WANT THE SURGERY AND THAT YOU ARE WILLING TO ACCEPT THE FINAL OUTCOME. I broke my left Fossa then my body failed me and I no longer had the bone I needed to hold the left TMJ Concept Implant in my face so it had to be removed. I know that if I decide to have the left side put back in I have to under go ANOTHER rib graft reconstruction so that I have bone in my face for the implant to be screwed down to so not only will my face be cut on AGAIN my chest will be cut on again. Every surgery I ahve had with the exception of the very first and we will not go there...I have researched every thing I can about the surgery, the materials, the possiable outcomes, side effects, the surgeon everything I could find and when I went into the OR I felt that I had as much knowledge about what was about to happen to me as I could. Okay, no more preaching.....just make sure YOU are making an educated decision.


We need a place to post our TMJ stories on this board so that others can see where we have been on this TMJ life road and how far some of us have been able to come.

Shirlett

 
Old 09-19-2005, 09:00 PM   #9
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Re: Looking for information on TMJ Concept Replacments

Thanks for the real story about implants I am so sorry. I am going to do much more thinking about it.

Take care,
Michelle

 
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