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TMJ Disorder -TemporoMandibular Joint Message Board
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Old 09-12-2005, 12:48 AM   #1
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Now surgery? anyone had surgery? Good Surgeons?

I am desperate, after 3 1/2 years of pain, 30,000 spent on TMJ I think I may need to do surgery and I dont even know where to begin.

I have not heard good things about TMJ surgeries, but my life is passing me by, every day is pain and discomfort. Ive been through 5 spints, 2 arthrosentsis proceedures, 100s of shots in my face, neck and head......a poked hole in my ear drum to help ease the ear pressure and dizziness caused by TMJ, about 18 rounds of antiboitics for the ongoing ear infections from the back up of the eustation tubes since the messed up TMJ joints limit their ability to function right......and 3 years out of work.

I am broke out of my mind, I have no credit because of med bills, I cannot date anyone because I cannot eat normal foods or kiss them, or even stay awake for 18 hours. I never sleep at night and my ears ring.

I am at the end of my rope, I try to fake a smile everyday. This is no way to live and I dont have the strenght to do it much longer. I now cry almost everyday because things are hopeless, I dont even have the money to do things to keep the pain away anymore.

Can anyone tell me about a surgical expeience they have had, any type, arthroscopy, open joint.....etc.....Any good or bad experience. Please help......Oh, and if three are outstanding doctors ANYWHERE in the USA who do this thing......Thank you very much......

Last edited by papergoods; 09-12-2005 at 12:51 AM. Reason: letters too big

 
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Old 09-12-2005, 04:48 PM   #2
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Re: Now surgery? anyone had surgery? Good Surgeons?

I have not personally had surgery but I know two friends who have and neither of them are doing well. I post on another TMJ board as well as this one and nobody on that board has had good experiences either. They all say they had surgery basically for the reasons you are describing here, because they thought the pain couldn't get worse but guess what? The paid DID GET WORSE. There is a suffereing beyond what you suffer now and if you are looking to suffer further then surgery is the place to go. Whatever you decide don't believe it because a surgeon says to you that you will be better because once your TMJ is damaged it will never be the way it was before it became injured. Your TMJ will never again be perfect and I don't believe any of us can be perfectly out of pain because the TMJ is such a delicate joint but we can do splint therapy and use meds to keep the pain to a minimum but even if you have surgery you will NEVER be totally out of pain and your jont will NEVER be perfect the way it was before it became injured. I would plead with you to please think LONG and HARD before you consider allowing surgery because the fact is that you can suffer worse than you are suffering now. Good luck in your search.
Tiffany

 
Old 09-12-2005, 06:04 PM   #3
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Re: Now surgery? anyone had surgery? Good Surgeons?

hi papergoods,

i echo what tiffanyann wrote - each and every word. next month will be a year that i had what was supposedly a minimally invasive surgery. i have posted here on my experience regarding that surgery and my experience was far from positive. i hope you'll read my posts and the posts of others who have had surgery (both good outcomes and bad). i feel for you. i know what you are going through: from the physical to the financial to the personal. i know you feel desperate and you feel you have to take a stand to tame this monster. i thought the same. let me tell you: this monster tamed me. i wish i could go back in time to the day before i had the surgery. i'd give anything to trade the state i'm in now for the state i was in back then. the only thing i can offer is the advice that you try another round of splint therapy with a fjo dentist. there are so many splints that are designed for a variety of tmj problems. please keep trying splint therapy until you find one that, at the very least, alleviates SOME of your tmj dysfunction. you may find yourself on a conservative path you have not yet explored. as for the pain, i hope you can get on a program that includes anti-infammatories, pain medicine, acupuncture, biofeedback... anything conservative that will give you a few hours (all in a row) where you feel you can function well. i really wish you well. i'm so sorry i couldn't be of more help.

 
Old 09-12-2005, 08:10 PM   #4
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Re: Now surgery? anyone had surgery? Good Surgeons?

I wish there was something I could say to you to help you through your difficult time. The pain alone is enough. And, what it does to our lives...this could fill a novel.

As with some on this board, my past surgical history is less than perfect. My last surgery was in 1993. It was a bilateral open joint w/ ear cartilige grafts. It worked. I had gone through this bout of TMJ for 6 years...all of my teenage life. I tried a lot of non invasive procedures, yet none of them worked. By the time I reached 1993, I had endured 12 surgical procedures on my TMJ..all of them were bilateral.

At this moment, I am facing a bilateral total joint replacement in a month. I am 30 years old. This 'new' bout of TMJ was a result of an injury. I had gone into a restaurant and had (unbeknownst to me) bit on a metal screw in my dinner. Since that night, the pain has been my 'best friend'. It has been with me 24/7. And, yes I have gone through non invasive procedures, PT (2 different rounds), splint therapy, trigger point injections, exercise, and massage.

Finally, I was referred to a pain management doctor who ultimately put me on duregisic pain patch.

I am telling you this because...though I cannot totally understand your pain and your situation...I do understand and feel for you. But, please do not give up hope. There are knowledgable doctors out there, who have an excellent bed side manner. What about a teaching hospital in your area. Check with, I believe it is the Journal of Oral and Maxilliofacial surgery. Above all, though you are exhausted with this, research is the best weapon.

And, by all means, please reconsider any surgical options. The more you have, the more you may need. Just educate yourself. This is just how I feel, considering I have had multiple arthroscopies, multiple open joint procedures, and an arthroscentsis.

Above all, take care of yourself. Pamper yourself. Do something for you. It can be as simple as journaling. It can be a cup of hot tea in a quiet place. A book. A magazine. A hot bath.

Hang in there.
I wish I could help more,
Meditation

 
Old 09-14-2005, 08:42 PM   #5
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Re: Now surgery? anyone had surgery? Good Surgeons?

Thank you all so much for taking the time to respond in detail. you are probably saving my life. I went on a rant because as you all know, my mind wants to live, and love and work, create and grow. Im 29 and I just can't imagine 20, 30 more years of the disappointment. My family demands answers, one therapist told me that people who havent had a major unresolved chronic pain issue cant understand. They think you go to a doctor and things get fixed. Its weird that people think that way, when there are things like cancer and such that are unexplained and well known in society.

Since I got hurt my parents have been helping with the medical bills, they are so done. I have to come up with answers as to why I keep spending money on conservative treatments when they don't make me "better" I try to explain, they dont fix me but they keep me out of agony. And the mental side of this.....its just really hard.

Do you guys think about your TMJ everytime you talk and eat? I do, I feel it even when I dont move my mouth, just sitting I feel one disk being crushed, the other pressing into my ear.

I really miss having a normal face. I often say Im "broken" -- my friend hates when I say that, I feel that way, broken. I feel like I have dreams and I can't chase them. I don't even know if Ill be able to have a child. That really brings me to tears. How would I deal with 9 months of no medicine to calm this mess. No children, no career and everytime I step out of my dark hole to go out with friends I am slapped in the face if I smile a lot. I come home with hours of pain and have to lay on ice and heat forever.

TMJ is a monster. It ownes me, I despise it.

 
Old 09-15-2005, 02:13 AM   #6
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Re: Now surgery? anyone had surgery? Good Surgeons?

Papergoods- What exactly is wrong with your joints- I must of missed it. Do you have disc problems, arthritis, or are your joints out of place? I feel so bad for you being so young and having this problem. Wish I could help you someway.

 
Old 09-15-2005, 09:39 AM   #7
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Re: Now surgery? anyone had surgery? Good Surgeons?

Papergoods,
I am so sorry to hear how you are doing. I, too, am curious about what type of tmj disorder you have. As many of those on here know, I am one of the few success stories with surgery. I am about 7 or 8 months out of surgery and pain free. The problem with surgery is, it can make it better or it can have no effect, or, it can be worse. I know you probably don't think it can get worse, but there are horror stories on this board. I had displaced discs and had them repositioned 11 years ago. I had a low level of pain for about 9 years, and then, things got bad. I had a discectomy (open joint surgery) in February. It was a longer recovery, but things are great now. They won't be forever though. I know that I have condyle damage and arthritis, and will, more than likely, have to have a joint replacement at some point in my life. Hopefully, very far down the road. I know that you feel you have exhausted all other options, but be very careful. I will pray for you.
Tandy

 
Old 09-16-2005, 01:09 AM   #8
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Re: Now surgery? anyone had surgery? Good Surgeons?

Hi,

Basically I had spine surgery (c5-6) fusion 3 years back about 3 weeks after the surgery my jaw began to pop, click and lock, then all the headaches started and I could not chew.

My MRI shows the right side the disk is trapped back, dislocated something....the tomograms show the left side has some type of internal derangement.

When i open my mouth the left side opens and the disk captures way before the right, my face slants all day causing pressure on the right side and muscle spasms on the left. My ear has so much pressure it hurts daily, causes me dizziness, I even got Mastioditis (aka) inner ear disease where water gets trapped in your inner ear. I was on antibiotics for 8 months.

 
Old 09-16-2005, 02:50 PM   #9
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Re: Now surgery? anyone had surgery? Good Surgeons?

I just had surgery- bilateral arthroscopy- two weeks ago and am feeling awesome! It was the best decision. I loved my surgeon, he did an amazing job. I have to go to physical therapy every day for two weeks and then 3 times a week for another three weeks. I have to say that the pain was hardly anything. I expected it to hurt so much more than it did. I was hardly swollen. My friends and family were so surprised at how well I was doing the next day. I could talk normal and the only thing that indicated I had surgery was the tiny stich (I mean exactly 1 stich) on either side of my cheek up near by ear. Anyway, you have to do the pT, that's 90% of the recovery- and I'm not going to lie, that hurts really bad. But just likeany other surgery, as you progress, it hurt less. I am able to open my mouth almost all the way now with no pain, no popping and not locking. Well that's my experience. I was on this site right before surgery and it freaked me out. But keep in mind that the people who have successful surgeries are not going to be the ones that complaint on this site.

 
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