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TMJ Disorder -TemporoMandibular Joint Message Board
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Old 03-16-2003, 04:46 AM   #1
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Cymy Sue HB User
Question Should We Post or Not........... Opinions?

I was very concerned by Mary's reaction to my post regarding surgery and have been hesistant many times, when these questions regarding surgical experience are ask. My feelings are the same as Elaine's, if I had known the consequences of surgery for TMJD from the experience of others, I would have made different decisions.

I also am still learning from this community of TMJD sufferers. I appreciate all who post their experience.

When I joined this board a few months ago, I was under the impression that many of the surgical procedures that I had, were now obsolete or had been improved. Reading the posts of the members who have had surgery in the last couple of years or are currently considering surgery, it appears there has not been much change, improvement in techniques, or a better prognosis for many of the patients. It's as Elaine says, it's still "a hope & a prayer".

I had wondered for sometime if I had not ever had surgery, what my condition would be now.

In December, my Dentist gave me the results of a 20 year Study & Survey of TMJD sufferers, comparing those who had surgical procedures to those who had non-invasive treatment or no treatment.

In regard to the TMJ deterioration and progression of the disease, we're all in about the same condition. Some arthritis, bone necrosis, disc deterioration, & muscle problems, etc.

The difference is, many who took the non-invasive route got better and the majority of us who took the surgical route also have to deal with scar tissue, nerve damage, iatrogenic problems of all kinds (damage or disease caused by treatment, surgery or medication), other post-surgical syndromes and the list goes on.
This surgical damage cannot be reversed, the worst being defective implants and/or other types of prosthesis.
The consensus of the report is, if we had never had surgery, we would still have TMJD, but we would possibly be in a "condition" that would be more manageable, as far as pain & discomfort are concerned.

The report also stated that in some surgical cases, 10 to 20 years after the damage, the disease will settle down to a manageable condition.

When I first made the post of this information, I was not sure how it could apply to me. I had hoped it was true. Three months into splint therapy, (after being told the last 5 years by the Surgical Community that my only option was medication) I am better than I have been in years.

So after over 15 years of surgeries that caused severe problems that I would not have otherwise, and being helped with splint therapy in such a short period of time, my experience, posts made by other members and this report validates my opinion on the majority of TMJD surgeries.

My question to all is, when someone is considering a surgical procedure and ask questions regarding experience & outcome, do we need to post our experience or remain quite and hope they do not suffer the consequences that many of us know cannot even be imagined until after it's too late.

I hope all who are involved or interested in this aspect of TMJD will respond to this post, and let those of us who have had surgeries know how you feel about posting surgical experience.

Thanks,
Cymy Sue

[This message has been edited by Cymy Sue (edited 03-16-2003).]

 
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Old 03-16-2003, 04:56 AM   #2
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Sue, I appreciate any and all information that is posted on this board. I have not been approaced for surgery as of yet and from what I have read here I wouldn't do it and that's thanks to all of you who have. My feeling is, if nobody is posting any good results from surgery then that says something about the surgery. I feel bad for all of you who didn't have a medium like this to gather ALL information out there before a decision was made. So I say thank you to all who have gone before me and have posted your experiences here to try and save others the pain that you all now suffer. Please know I mean that from the bottom of my heart.....God Bless, Jill

 
Old 03-16-2003, 05:01 AM   #3
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Isew4work HB User
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CymySue,
Yes, I do think you should post what you know. It gives people a better chance to learn the truth and make a decision based on more than just a Dr's opinion. When I said that I wish I hadn't found this board it was not because I didn't like the information, it was because the information is not good. But much of what we need to hear in life is not pleasing to the ears, we still need to hear it.

I am just really struggling with what to do. My jaw is locked at the first click about 50% of the time. I just want to believe that arthoscopic lazer will hold that disk in place and all of my problems will be taken care of. I know how unlikely that is though. IT is just very hard to live this way, sometimes I think I never had much true tmj until after the arthrocentesis. Now I just hate it, and I need to feel better.

If I really did not want to read this board, I would not come here. If I had complete peace with my decision I would just take this board off of my favorites list and not come back. So don't stop writing. Its sort of like church, we don't always like what we hear there, but it makes us better off and we keep on going.

I am sorry if I offended you.

Mary

 
Old 03-16-2003, 07:12 AM   #4
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Cymy Sue HB User
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There was no offence taken. I always hesitate before posting information regarding failed treatments and surgeries. Trying to find answers and the appropriate care is confusing and extremely stressful.

I have never wanted to add to the stress and know that we all respond differently to any treatment or procedure.

I just can't find many success stories when it comes to surgery for TMJD and I do know the aftermath of the failures. I just want to say to you all "Try everything else first, be patient, something may work if you give it time."

These surgeries cannot be undone if they don't work or make things worse.

Again, I did not take offense. I did not want to upset anyone.


Cymy Sue

 
Old 03-16-2003, 11:17 AM   #5
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Sue,
I am glad you posted that question, I wondered the same myself. I know people must get very discouraged reading our posts. I feel they are better to be discouraged, rather than jump into something they "may" regret the rest of their life. You have given me hope and I had none at all. I am seriously going to try splint therapy again. I think had I found the right one, it may have worked in the first place...You are living proof of that. I know I need one more surgery to remove this implant, not that it can do much more damage than it already has, but because I don't like it in my system. The crunching and cracking from it breaking bone everytime I move my jaw has just about taken its toll on me. Talk about people having rocks in their head, mine sounds like a gravel pit!!!LOL...
I am off to take care of my sick mom for a few days, good thing we came home when we did...It is not good.
Take care of our little family and if they don't mind, stand them in the corner.
Take care,
Elaine

 
Old 03-16-2003, 03:33 PM   #6
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Hi Cymy Sue:
I think when someone asks a question that all who have information pertaining to the question should answer and answer honestly from their own experience. The answers are often not what they might have wanted to hear but nothing speaks LOUDER than experience. I have wondered myself sometimes if I should not have answered some of the questions because it seemed the response was not appreciated but I feel if a question is asked I need to reply honestly. I have learned that by not speaking up or just letting someone believe what they want to believe for whatever reasons usually only adds to their suffering. I for one, what to know the facts from people who have been living with the disorder and know from experience rather than from some dentist/doctor who may be speaking from their want of "a new boat". So, in answer to your question I say yes when someone asks a question and you have the experience you should tell what you know.
Tiffany

 
Old 03-16-2003, 11:07 PM   #7
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thisstarr HB User
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Hi Sue,

My answer is Post..post..post... I dont even know where to begain, If it wasnt for you and Elaine and others who have posted about your experence with your surgeries I would be clueless

I havent read the post you were talking about yet, but to me it doent matter, I have learn so much from what you have told me and I am so thankful for everything I have learn from you, and others.

I think your doing the right thing talking about what has happen to you and your experence with having TMJ surgery. All you are doing Sue in informing others what could happen, NOT WAS IS GOING TO HAPPEN. Your letting others know what could happen later down the road and you just want everyone to be more informed about it.

I am so thankful from all the stuff I have learn from you and Elaine, I am only 23 and have been suffering from TMJ for a very longtime, and I have had many doctors tell me about Surgery and they told me that it is an easy surgery and I will be fine and never will have pain again, I was never informed about "what could happen". I would of believe the doctor 110% I now know that doctors are idots and I know more about TMJ then they ever will!

I didnt know much about TMJ untill I found this board. I learned a little from researching it on the internet but that was about it.
I learn so much from you, your not here to be anyone's doctor, and if anyone thinks you are they are smoking crack!...lol..lol.. your here for support and to be a helping hand!

I hope you still share your experences
Take care,

Starr

 
Old 03-17-2003, 06:42 AM   #8
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OHJELJ HB User
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I would second and third the motion! Continue to post! Everyone's physical makeup is so different, that no two people will have the identical reaction to a certain type of treatment! Just look at all of the different doses of flexeril everyone is on and how it works great for some and not others!

I've now had arthroscopy twice. The second was two weeks ago and it has been a very difficutl recovery. I'm still on liquids and start PT tomorrow, but I'm in none of my original pain. The surgery worked for me ten years ago until about 3months ago...they couldn't fix my condition without surgery. I had no choice. It was, live with the pain or fix it. I had no mobility in my joint and the disk was slipped out. The doctors worked for hours to removed the scar tissue and put the disk back...luckily the disks weren't perforated at all. I'm back to normal with a 40mm opening.

Obviously, this isn't the case with everyone! Each case is different. So, all of my ramblings aside, please continue with your thoughts and experiences. It's great that everyone gets both sides of the story!

Thanks!
Jennifer

 
Old 03-17-2003, 11:21 AM   #9
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mbr22 HB User
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Yes - post, post, post! I have learned a lot on this board. Now, if we could only get the doctors to read this board!?!

mbr

 
Old 03-28-2003, 01:02 PM   #10
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Cymy Sue HB User
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I wanted to bump this post up, so the current readers and newbies will know that the members of the "Failed Surgeries and Implants Club" are very concerned about the experiences we post. We have tried to make it very clear that we do not want to influence anyone's decision regarding treatment or surgery. We have hesitated to post our bad experiences when someone is considering surgery and ask about what to expect.

Everyone should be completely informed about every aspect of a surgical procedure or treatment.

I have been at this a long time and still learn something everytime I research.

Just a reminder, that we are concerned, sympathetic to the decisions others are having to make, support and send our prayers and best wishes to those who decide to have surgery.

Cymy Sue

 
Old 03-28-2003, 08:52 PM   #11
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as a newcomer to this board and to this condition.. i'd just like to say what a great community you have. most of the people here seem genuinely honest and forthright about their condition. for that i say thanks!

when first diagnosed i thought.. okay i have tmj *shrug* i thought it was a temporary thing that would just go away in a couple of weeks. haa. i was wrong eh? i'm glad that i found you guys/gals at the beginning so that i can make informed choices about my treatment. i'm glad you post your experiences.

i'm still trying to get a feel for all of this since it's still new. i have so many questions still. like ... does anyone know of a correlation between how you get the condition and the treatments that work? say that janedoe is in an accident and hurts her jaw and at the same time johndoe gets a bad cold which starts his tmj journey. for janedoe a splint works but for johndoe the splint makes him worse but he responds well to medicine. OR is it 'once you have the condition then your xrays and other tests look identical' type of thing?

panch

 
Old 03-30-2003, 12:42 PM   #12
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I am personally very grateful for the unvarnished truth. Only with that information do I feel any degree of efficacy regarding treatment choices.
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Old 03-30-2003, 02:01 PM   #13
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Hi Justpancho,

I'm another newbie to this and just as confused by it all as you. I thought I had an ear disorder for 7 months - did tonnes of research on ears - have realised ears are much easier to get the hang of - if people have the same condition they all require the same treatment for it, if you see what I mean. With TMJ I'm finding it hard to v. hard to figure out. What's scarey is the wrong treatment it seems can make things worse, again, with ears, this doesn't apply, it just won't help if it isn't the right thing. Although I'm guessing my first port of call should be a dentist who specialises in TMJ, and that I probably want an NTI splint as I clench not grind. Although I'm worried about picking a specialist - how will I know they are any good? I will only have their word for it. Ah well, the research continues.
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Old 03-30-2003, 08:28 PM   #14
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I also think this board is great. It is absolutely necessary that all of us be totally honest I think and because we are all sufferers I know the information I get here will be honest unlike the doctors who only want to make alot of money off doing surgery, etc. So, I also thank everyone for their honesty and kind hearts towards each other and our suffering. You are a great group of people.
Tiffany

 
Old 03-30-2003, 11:30 PM   #15
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>>>Everyone should be completely informed about every aspect of a surgical procedure or treatment. <<<

I am of that belief too.
I am still wandering around in diagnostic land
where my jaw and neck pain are concerned.
However, I had the hysterectomy horror surgery last year, and I only wish I had been informed enough
to know all the possible consequences.
Given the severity of my personal situation I would have made the same choice to have the surgery.
But I would not have suffered for so long and in the dark if I had the knowlege I have now.
It's one thing to go through the ordeal and quite another to wander around not knowing what to do.
Both good and bad expereinces help us make up our minds as informed individuals. The good gives us hope and the bad prepares us incase we run into trouble. Trouble that isn't necessarily always the surgeons fault.
It's just the situation of our body and it's healing mechanisms.
Truth is a good thing when we are making huge decisions that can change our lives.
kat



 
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