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Old 09-20-2003, 06:08 AM   #1
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Cymy Sue HB User
Red face Surgery Does "NOT" Cure TMJD

Hi to all,

I've been out of touch a few days. (My Mother is ill)
I noticed there are several new members with questions, and "advice" regarding surgery.

I'm an "Old Pro" with many of these surgeries. I don't know everything, but I do know, Surgery should
"NEVER" http://www.healthboards.com/ubb/bang.gif be considered as your first line of treatment, if at all.

The only reason to have your jaws operated on without trying everything else available & then some, would be damage to your face due to an accident. (Car Wreck,etc.)

I have made many posts about these "Surgeries", as well as many other members. Please read these posts.

There are a couple of members who report successes, but the majority do not.

I was told these surgeries would cure TMJD over 20 years ago. There was not any information to the contrary and no one to ask, does it work.
The majority of the members who have had surgery, did the same thing. They started many years ago, with no one to tell them the risks, and if the surgery fails, your life is never the same.

If you are considering surgery to cure TM joint problems, "PLEASE" find out everything you can first.

A Dentist, qualified to evaluate, diagnose and treat TMJD, should be your first stop.

I recommend this because I was a "Surgical Mess" 6 surgeries,spanning 10 years. Diagnosed with TMJ 25 years ago. Oral Surgeons ruined my life and threw me into "Pain Management", with no other options.

My Dentist designed a very simple splint that has given me my life back, in a few months.

Please don't make the mistakes that some of us did in years past, due to no information

I have been very hesistant to post of bad experiences with surgeries, even after asking the other members if they wanted to know. There have been so many new members in the last few weeks who have not seen some of the older posts, I feel those of us who have been through these and had complications, need to bump up our old post or retell our stories.

I would never tell anyone not to have a surgery that they have been told they need. I will tell everyone to educate yourself from every source you can find, before you agree to any invasive procedure. Surgeons rarely tell you all that can happen.
This advice comes from very "Painful Experience" and there are many members with the same experience or worse.

Cymy Sue



[This message has been edited by Cymy Sue (edited 09-20-2003).]

 
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Old 09-20-2003, 01:01 PM   #2
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Hope247 HB User
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Hello,

I read your post today. I see your perspective and can respect it. I am new and I wanted to share my experience with you personally. I had surgery 1wk and 2days ago on my right tmj. I have had it for about 3 years. However, about 1 1/2 months ago, my jaw locked! I couldn't open my mouth more than one inch. It hurt so bad and caused me to be frighted, which probably did not help the situation by tightening my muscles around my jaw. I went to see my dentist and he immediately recommended me to my ortho who then recommended me to and oral surgeon. I was in so much pain he put me on steriods and pain meds which did decrease the swelling but not my locked jaw. I had an MRI and found out that both tmj discs where lodged anteriorly causing my mouth to not open. Then, waiting for Ins. was my next battle. I was not going to survive on pain meds nor was I going to not open my mouth and be in so much pain in my head and ears. I was scheduled for bilateral surgery on both sides. Well, my one side was only done. The arthroplasty took 2 1/2 hours because my disc was lodged so much anteriorly. Today, I have a therabite to pry my mouth open for therapy. That is my story. Was it like your experience? I am recovering but slowly....my ears hurt from the pressure and the surgery itself.

That is my story....so far.
hope 247

 
Old 09-20-2003, 01:49 PM   #3
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Cymy Sue HB User
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Hope,
I'm terribly sorry to hear of your ordeal. I do not have any experience with completely locking. I'm not clear about your opening of 1 inch. Did it get worse/less? 1 inch is roughly 25 mm. I was at 19 mm and less for many years, due to surgeries. There are many members who are living with much less than 19 mm.
I'm sure the problem must have been very serious for your Doctors to advise surgery so quickly, without trying other treatments a little longer.

Was your surgery to relocate your disc?

My original disc were deteriorated and mostly hanging out of my joints for many years. In 1992 I had an Arthroplasty to remove and replace them with Auricular (ear) cartilage. These failed in about 2 years and in 1997, I had an Arthroplasty/Discectomy with no replacements. These surgeries usually do cause a lot of pain for a while.

Since I'm not sure exactly what you had done, I don't know how to make a comparison. If your original disc was "put" back in place, it may not take to long to feel better.

I made this post about surgery, for those who can be helped with non-invasive treatments. I don't want anyone to make the mistakes I made. I've had 6 surgeries since 1988 and never got any relief from TMJ Pain & Symtoms. I got worse with each one and now have surgical damage to the nerves, bones and muscles.

I am doing well now with a splint designed for my condition.(Surgical damage and no disc)

I am sorry that surgery was your only option.
I'll be happy to answer any questions that I can.

Cymy Sue

Hope, I just read your post that your disc was sutured into place. I'm glad your disc was healthy and hopefully you will not have any more problems.




[This message has been edited by Cymy Sue (edited 09-21-2003).]

 
Old 09-20-2003, 04:46 PM   #4
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Join Date: May 2003
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Arleen HB User
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Hi Cymy Sue:

I just wanted to say hello. Sounds like you're doing well with your splint, which is great to hear. I hope your mother feels better really soon.

I also want to thank you for continuing to post about your experiences. You have so much wisdom and information on the TMJD, and surgery and I appreciate that you continue to share it with us.

Take care,
Arleen
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Old 09-20-2003, 05:24 PM   #5
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NeedANewHead HB User
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I want to thank you too, Cymy...you are a REAL asset to this forum. I believe your telling of your experiences can change lives for the better. Keep it up!!

 
Old 09-21-2003, 01:54 AM   #6
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CherylLynn24 HB UserCherylLynn24 HB UserCherylLynn24 HB User
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I agree with NeedANewHead, Cymy Sue! http://www.healthboards.com/ubb/t_up.gif
Cheryl

 
Old 09-21-2003, 11:57 AM   #7
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carebear73 HB User
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Yes. Thank you for your postings. I never even thought about investigating into the procedure or anything. I definately would now. My jaw locked as well. I was in really bad bad pain. I think that's why they suggested surgery. I was only 18 at the time. I didn't know anything about it. I do need to go to the dentist. I do have to find a new one, seeing the last time I went, I had a root canal and ended up getting my tooth pulled out because of it. I wonder if that could have anything to do with contributing to jaw pain?

 
Old 09-22-2003, 02:24 PM   #8
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mdjuUK HB User
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Hey Cymy Sue,

I was reading your other thread about orthognathic surgery and hoped you could answer a few questions for me. I've just been offerred this type of surgery myself to correct my bite because my maxilliofacial surgeon thinks that my jaw may of grown over to much on one side hence causing a maloclusion.

I've had an MRI done which showed my left disc was displaced forward and the right one was thinned. I've also had a bone scan which showed no active growth in my jaw and also a frontal x-ray that apparently showed no real abnormalities.

When you had your orthognathic surgery what was it to fix? TMJD? jaw overgrowth? maloclusion?

I'm really quite confused on this one as when i look in the mirror it does look like my jaw deviates to one side. I'm not sure if this is the muscles pulling it over or it actually has grown over. If it had grown over, then maybe thats what caused the TMJD and the muscle tension?

Thanks

[This message has been edited by mdjuUK (edited 09-22-2003).]

 
Old 09-22-2003, 02:35 PM   #9
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Djin HB User
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Thanks for asking your question, mdjuk! I had been wondering the same thing. My situation is like yours, except that my disks seem to be fine. My tmj isn't horribly bad, and the pain relief I would get would be secondary to having my bite corrected. Does that make sense? My biggest issue is my improper bite, which is why surgery is suggested.

Cymy Sue, just to clarify for us, are you saying you wouldn't recommend orthognathic surgery to cure tmj, or are you saying you wouldn't recommend it period?

Thanks!
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Old 09-22-2003, 02:39 PM   #10
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Michelle W HB User
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I am curious to know if you are having any symptoms related to this problem with your jaw? I would get several opinions/recommendations prior to any surgery.

 
Old 09-22-2003, 03:02 PM   #11
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OHJELJ HB User
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Phew CymySue...you make it tough to be a success story on this site. I completely agree that not ALL types of TMJ Disorders can be corrected with surgery. HOWEVER, some can. In my case, the mechanical problems of having dislocated both disks were corrected by surgery. Albeit, I had the surgery twice. However, the one problem that I do have that wasn't addressed the first time, was the myofascial pain disorder. The muscles were causing my entire problem and continue to give me problems today.

The muscles are stressed due to bad behaviors that I am working to correct...thrusting my chin up etc...once I control this behavior, my problems should be gone completely. I will never be able to chew gum or bite into an apple again..but also won't miss these things either! I can yawn, chew, sing, smile and live my life completely like I never could have done prior to surgery.

While I believe that the surgery corrected my mechanical bone issues, I believe that the PT I've received has fixed my muscle issues. My joints are very healthy and I have a prognosis of perfect from my doctor....I never would have gotten my life back without this procedure.

I had NOTHING even close to the procedures you've had however. This note is just to let people know that depending upon your problems, some minor, less evasive procedures done surgically, can and do create a positive result!

Would I let another surgeon work on my jaw again...probably not. Would I do what I had done again? Definitely! Would I go through a reconstruction or other major surgery on my jaw? NO!

In my case, the biggest problem that I've had through the years was behavioral. Not physical! I ground my teeth from the age of four on and no one thought this was a problem. WRONG! This behavior, along with a few others picked up through the years, has created most of my problem.

This note again, is to recognize that it depends upon the problems suffered by each individual and the levels of pain that they are willing to live life with! I wanted my life back and did what had to be done in my case.....not all TMJD are this easy to fix!

Thanks for sharing your experiences....
Jennifer


 
Old 09-22-2003, 04:52 PM   #12
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Cymy Sue HB User
Red face

mdjuUK,

Your Surgeon should know if you have a bone overgrowth or if one is longer than the other. He should know without a doubt that you have some type of severe abnormality before even suggesting this surgery to you.
Your X-ray shows no active growth and no real abnormalties. This surgery is to correct severe abnormalities and deformities that can not be treated otherwise.

Splint therapy can in many cases help with the disc. Please read "Marlene's Success Story" of displaced disc being recaptured with no invasive surgeries.

I had these surgeries to cure TMJD. It does not.
16 years ago, they did them very frequently with very little thought to the damage that could be done.
With the information available now, I should have not had these.

Muscles are usually the biggest cause of pain and even deviations. My face was drawed to the right after these surgeries for 16 years. It has now straightened with Splint Therapy.
Please find out more about this surgery and get more opinions.

Djin,
How bad is your bite?
Have you tried splints and/or othodontics?

I am not a Doctor, but from experience and material that is available everywhere, you can read that orthonathic surgery does not cure TMJD pain, symtoms and problems. It can make them much worse due to the trauma.

From personal experience if you are considering having this surgery for TM Joint pain and problems, NO, I would not recommend it to anyone. I would not have them if I could go back. I didn't need them.

If you have some type of deformity or abnormalty to the bone structure, I would recommend you find out everything you can about this procedure and get more than one opinion. Get several.

Sorry, Jennifer. I appreciate your sharing of your problems and the procedures you've had to correct it.
I had bad disc, too. They were too bad to fix.

The surgery these members are asking about is an extremely invasive procedure. Anyone considering this should know all the facts. Surgeons do not tell you all the bad stuff.

I don't know if there is another surgery quite like this. Breaking the bones in your face, maxillas or mandibles, sometimes both. Reducing or extending these bones. Going through your mouth and cutting a very large area to expose these bones. Working around very complex and sensitive nerves. Putting them back together with screws and plates that stay the rest of your life if they don't cause infection.
And on and on.
Does this sound like it would help TMJ pain.

I'm glad you're feeling better.


Cymy Sue

I think I made a post that gives some more details and the "NEW' consent forms. Please read them and know that these complications can happen. Many of them happened to me.



[This message has been edited by Cymy Sue (edited 09-22-2003).]

 
Old 09-23-2003, 08:22 AM   #13
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Djin HB User
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Hi, Cymy Sue.
I have an open bite. Only the back molars touch when I bite down or chew. So the braces and surgery would be to fix that so I don't break my teeth down the road at some point.

Haven't yet done orthodontics. That's the first step. I'm to be fitted for a nightguard next month to keep me from grinding my teeth at night. (Yay! No more biting my tongue in the middle of the night!)

Trust me, after hearing your story, I'll be extra sure to do all my homework. I'm not fond of the thought of people mucking around with my bones, anyway. I'll be sure to research it some more, and perhaps get a fourth opinion.
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