Cymy Sue
06-19-2004, 08:00 AM
I read your entire post and the results of your tests I don't understand everything in the terminology, a little. I do understand being at this point and not knowing what to do.
I'm sorry you had to read what can happen from this type surgery. If I had read it, I would have made different decisions 16 years ago.
I have prayed that these surgeries would be improved and refined by now.
I'm sure techniques have improved, but the surgeries are still incredibly invasive, have many risks and these procedures DO traumatize your joints terribly.
People with healthy joints who have this done, sometimes develop Joint Problems.
Those of us who already have deteriorating joint structure and/or bad disc do tend to get much worse. I know it's hard to believe you could be worse.
You can.
You will have incredible added trauma to your facial muscles, altered bone structure and possibly, nerve damage. The bones, muscles and nerves are in effect, assaulted. They all have to try and heal. It takes a long time. The joint structure has to try and withstand these surgical alterations. They have to try and function with different bone structure and muscles that are repositioning to accomodate the difference in the jaw structure. The nerves that are most commonly affected are the 2nd and 3rd Trigeminal Branches. The 3rd (V3) runs through the mandible and almost always is affected to some degree. Numbness results, many times from your lips down. Sometimes the whole lower face.
I've been asked if it's numb, Then, it doesn't hurt, Right? (Wrong)
People should try living with a completely numb mouth and lower face. It's not pleasant and it can be permanent.(I've recently had some feeling return to my upper lip after 16 years)
I had hoped reports of these surgeries would get better with time. It seems people with TM joint problems still have the same or similar results as I had. Their facial structure is altered and they have worse TM Joint problems.
These surgeries should be done only for the worst of abnormalities and deformites or if someone has been in an accident.
They do not cure TMJD. They can make it worse, much worse.
In your report it said you have one condyle a little longer, 5-6 mm. That's about ( __ ) or less. My left condyle is permanently displaced about 15 mm lower than the right, from one of these procedures.
It said you didn't have an overbite. I didn't either. I had no abnormalities when they did this. In the 80's they thought restructuring a new bite would cure TMJD. They did this without the knowlege of the condition my joints. My joints were the problem, not my bone structure or bite.
My condyles had significant changes along with abnormal joint structure and bi-laterally dislocated and shredded disc. They didn't know. MRI's weren't done then. They used plain X-rays to determine I needed this done.
I didn't. I had 2 within 3 months. The 2nd was to try and repair some of the damage from the 1st. They didn't accomplish much with the 2nd.
I don't give advice about whether to have a surgery or not. I have made posts about several and related what can happen. Once they did MRI's and saw the joint & disc damage, I had disc grafts. They lasted 2 years and displaced laterally and shredded as my originals did.
I have been told the only surgery I should have had, was to take out the deteriorated disc, and smooth and reshape the condyles.
I had no condylar heads. I had very little of either left and they were both jagged and jabbing into the soft tissue.
I did have the discectomy and a "clean up" of the condyles. That was my last surgery. It was not easy, because 7 years ago, they had no idea how your nerves and muscles would react to this type of surgery. There was practically no follow-up care and I was advised a splint could make me worse.
Almost 2 years ago, I was not any better than I had been most of my life. I still had all of the TMJD problems plus the added problems of multiple damaging surgeries.
After reading here and being encoraged that a splint might help, I ask if it was possible.
It was and I am doing very well now, in spite of all the damage. The last 27 years have been a nightmare of bad treatments and surgeries.
They believe my joints were damaged when I was born and were never normal. I had headaches, earaches and face pain all through my childhood and teens, but no one knew what it was. I was diagnosed with TMJ when I was 24.
I am now 51. I do not have any "recognizable" joint structure, no disc, very little left of either condyle, the left displaced, and some seemingly permanent nerve damage.
About 19 months ago, a splint was designed for me to support my joints and let the muscles passively reposition. They had been overworking and over compensating for years to maintain a small degree of function.
The splint has worked miraculously. I have very few symptoms from the surgical damage (now) and no real TMJ type pain anymore.
I have a lot of nerve damage and what they called "Surgically Induced Trigeminal Neuralgia". The condition of the muscles had continued to make these problems worse. They had enlarged on the left side to hold the condyle/mandible in place and shortened on the right to compensate. My face was drawn and I could finally manage about a 15-19 mm opening. It took years of PT and Massage Therapy, on & off to keep this much of an opening.
The splint has let the muscles reposition back to as normal as possible and still maintain the function of the joints. The extra muscle mass has gone and the shorter ones on the right have elongated. My face is not drawn anymore. You have to look close to see the difference in the left to the right. My face has straightened and I can open 32-34mm.
Sorry this is so long, but if you don't have severe structural abnormalities, this surgery does not seem to be what would help you.
Possibly, the focus needs to be the on the disc & condyles and then attention to the muscular changes. There is "INCREDIBLE" repositioning and overcompensating that goes on with these kinds of problems. They are usually one of the main sources of pain and the changes in the way your face looks. A difference of 5-6 mm in condylar length is not a severe abnormality. Many people have that much difference and more and without displaced or deteriorated disc, causing problems, they never even know.
I have yet to hear anyone say that a Surgeon told them the risks of these surgeries (indepth) and the certainty that the joint structure will be affected.
I believe I would get another opinion with someone who is less aggressive about surgery. Ask what is the "least" that can be done to get you out of pain. If you are past splint therapy helping, maybe they should take a lot at the disc and see if addressing this problem would be the better way.
I had 4 unnecessary surgeries that only added to my pain and problems.
I did have disc that could not be repaired or replaced and the discectomy was my only option. It was bad enough, but should have been the only one I had.
With it, I am (finally) much better. With it, I would have had a short time of trying to find out how to get better, compared to 25 years of my life destroyed by TMJD, bad treatments and un-needed, damaging surgeries.
I would never suggest this surgery (discectomy) would be for you or help your problems.
Please find another surgeon who can tell you what will help and do the least damage, if in fact, a surgery is what you need.
Many times, the side that is not the worst, will hurt the most and cause the most problems. Usually, it's muscles compensating for the most damaged side. I don't understand this exactly. My damage was the same on both sides and the left always hurt the worst. I didn't know I had severe problems on the right until they told me from Imaging.
Both sides were exactly the same. Both joints deformed, both condyles deteriorated or damaged and both disc displaced, shredded and deteriorating.
Please continue to look for someone who will help you without doing more damage. I had this done a long time ago and we could say, it works better now.
Andy and a couple of other young people who post here (now) have had this done recently and are having similar problems that I did.
Cymy Sue
I'm sorry you had to read what can happen from this type surgery. If I had read it, I would have made different decisions 16 years ago.
I have prayed that these surgeries would be improved and refined by now.
I'm sure techniques have improved, but the surgeries are still incredibly invasive, have many risks and these procedures DO traumatize your joints terribly.
People with healthy joints who have this done, sometimes develop Joint Problems.
Those of us who already have deteriorating joint structure and/or bad disc do tend to get much worse. I know it's hard to believe you could be worse.
You can.
You will have incredible added trauma to your facial muscles, altered bone structure and possibly, nerve damage. The bones, muscles and nerves are in effect, assaulted. They all have to try and heal. It takes a long time. The joint structure has to try and withstand these surgical alterations. They have to try and function with different bone structure and muscles that are repositioning to accomodate the difference in the jaw structure. The nerves that are most commonly affected are the 2nd and 3rd Trigeminal Branches. The 3rd (V3) runs through the mandible and almost always is affected to some degree. Numbness results, many times from your lips down. Sometimes the whole lower face.
I've been asked if it's numb, Then, it doesn't hurt, Right? (Wrong)
People should try living with a completely numb mouth and lower face. It's not pleasant and it can be permanent.(I've recently had some feeling return to my upper lip after 16 years)
I had hoped reports of these surgeries would get better with time. It seems people with TM joint problems still have the same or similar results as I had. Their facial structure is altered and they have worse TM Joint problems.
These surgeries should be done only for the worst of abnormalities and deformites or if someone has been in an accident.
They do not cure TMJD. They can make it worse, much worse.
In your report it said you have one condyle a little longer, 5-6 mm. That's about ( __ ) or less. My left condyle is permanently displaced about 15 mm lower than the right, from one of these procedures.
It said you didn't have an overbite. I didn't either. I had no abnormalities when they did this. In the 80's they thought restructuring a new bite would cure TMJD. They did this without the knowlege of the condition my joints. My joints were the problem, not my bone structure or bite.
My condyles had significant changes along with abnormal joint structure and bi-laterally dislocated and shredded disc. They didn't know. MRI's weren't done then. They used plain X-rays to determine I needed this done.
I didn't. I had 2 within 3 months. The 2nd was to try and repair some of the damage from the 1st. They didn't accomplish much with the 2nd.
I don't give advice about whether to have a surgery or not. I have made posts about several and related what can happen. Once they did MRI's and saw the joint & disc damage, I had disc grafts. They lasted 2 years and displaced laterally and shredded as my originals did.
I have been told the only surgery I should have had, was to take out the deteriorated disc, and smooth and reshape the condyles.
I had no condylar heads. I had very little of either left and they were both jagged and jabbing into the soft tissue.
I did have the discectomy and a "clean up" of the condyles. That was my last surgery. It was not easy, because 7 years ago, they had no idea how your nerves and muscles would react to this type of surgery. There was practically no follow-up care and I was advised a splint could make me worse.
Almost 2 years ago, I was not any better than I had been most of my life. I still had all of the TMJD problems plus the added problems of multiple damaging surgeries.
After reading here and being encoraged that a splint might help, I ask if it was possible.
It was and I am doing very well now, in spite of all the damage. The last 27 years have been a nightmare of bad treatments and surgeries.
They believe my joints were damaged when I was born and were never normal. I had headaches, earaches and face pain all through my childhood and teens, but no one knew what it was. I was diagnosed with TMJ when I was 24.
I am now 51. I do not have any "recognizable" joint structure, no disc, very little left of either condyle, the left displaced, and some seemingly permanent nerve damage.
About 19 months ago, a splint was designed for me to support my joints and let the muscles passively reposition. They had been overworking and over compensating for years to maintain a small degree of function.
The splint has worked miraculously. I have very few symptoms from the surgical damage (now) and no real TMJ type pain anymore.
I have a lot of nerve damage and what they called "Surgically Induced Trigeminal Neuralgia". The condition of the muscles had continued to make these problems worse. They had enlarged on the left side to hold the condyle/mandible in place and shortened on the right to compensate. My face was drawn and I could finally manage about a 15-19 mm opening. It took years of PT and Massage Therapy, on & off to keep this much of an opening.
The splint has let the muscles reposition back to as normal as possible and still maintain the function of the joints. The extra muscle mass has gone and the shorter ones on the right have elongated. My face is not drawn anymore. You have to look close to see the difference in the left to the right. My face has straightened and I can open 32-34mm.
Sorry this is so long, but if you don't have severe structural abnormalities, this surgery does not seem to be what would help you.
Possibly, the focus needs to be the on the disc & condyles and then attention to the muscular changes. There is "INCREDIBLE" repositioning and overcompensating that goes on with these kinds of problems. They are usually one of the main sources of pain and the changes in the way your face looks. A difference of 5-6 mm in condylar length is not a severe abnormality. Many people have that much difference and more and without displaced or deteriorated disc, causing problems, they never even know.
I have yet to hear anyone say that a Surgeon told them the risks of these surgeries (indepth) and the certainty that the joint structure will be affected.
I believe I would get another opinion with someone who is less aggressive about surgery. Ask what is the "least" that can be done to get you out of pain. If you are past splint therapy helping, maybe they should take a lot at the disc and see if addressing this problem would be the better way.
I had 4 unnecessary surgeries that only added to my pain and problems.
I did have disc that could not be repaired or replaced and the discectomy was my only option. It was bad enough, but should have been the only one I had.
With it, I am (finally) much better. With it, I would have had a short time of trying to find out how to get better, compared to 25 years of my life destroyed by TMJD, bad treatments and un-needed, damaging surgeries.
I would never suggest this surgery (discectomy) would be for you or help your problems.
Please find another surgeon who can tell you what will help and do the least damage, if in fact, a surgery is what you need.
Many times, the side that is not the worst, will hurt the most and cause the most problems. Usually, it's muscles compensating for the most damaged side. I don't understand this exactly. My damage was the same on both sides and the left always hurt the worst. I didn't know I had severe problems on the right until they told me from Imaging.
Both sides were exactly the same. Both joints deformed, both condyles deteriorated or damaged and both disc displaced, shredded and deteriorating.
Please continue to look for someone who will help you without doing more damage. I had this done a long time ago and we could say, it works better now.
Andy and a couple of other young people who post here (now) have had this done recently and are having similar problems that I did.
Cymy Sue
Sponsor
Alisha
06-19-2004, 10:21 AM
Thank you for being so informative. I had apprehensions about surgery before finding this message board, but the doctor's seemed so reassuring that they could help improve (but never completely fix) my TM problems that I figured it was worth looking at. And it is, because now I see that surgery would probably leave me in a worse bind than I'm in now. My mom and I have seen so many different doctors over the years and they each have their own opinion...most of them contradicting. The only set of doctors that stick to the same story are those (who I've been evaluated by) practice at Shands Hospital in Gainesville, Florida, or got their degree from UF and now practice in Tallahassee (where I live). They're the ones who keep telling me that my TMJ can only improve by having surgery because the joint is the problem; there's no way to fix a joint but to have surgery on it.
So far I've tried:
Medications
Arthocentesis (where the doctor FORCED my mouth open to 40 mm while sedated, but my mouth closed back down to 28 mm on the way home, then locked closed for the rest of the weekend...I can't even get started on the way Dr W the First treated me--cruel and as if I were a liar.)
Acupuncture
Massage Therapy (the first time focused on the muscles and left me feeling WONDERFUL; the second time was with a different masseuse who specialized in some TMJ massage that was suppose to drain the lymph nodes. She massaged inside my mouth, which I wasn't too crazy about. On the way home, I continued to feel worse and worse; it took a week to get over the pain that lady caused.)
Splint Therapy (I wear it only at night and whenever doing mundane tasks...or if it just hurts.)
Applications of ice and heat (Ice works more for me than heat)
At the moment, I'm not too thrilled with the newest doctor I've been to, who specializes in Pain Management. She's never treated anyone with TMJ, the first fact that makes me rather leery of her abilities to help me. Secondly, she wants to work me off of ALL my medications, then stick me with a narcotic patch. I know for a fact that narcotics alone do not alleviate my pain and I told her so, but she just replied that I should let her do her job. As it is, the medication she's working me onto, Gabitril, reminds me of the days when I first began Neurontin...and I don't like it. As it is, I can function normally with Neurontin and Baclofen, though the medication tends to feel like it's wearing off 1-2 hours before my next dose.
I don't know what to do...and in the end, the fate of my jaw is always in my hands.
So far I've tried:
Medications
Arthocentesis (where the doctor FORCED my mouth open to 40 mm while sedated, but my mouth closed back down to 28 mm on the way home, then locked closed for the rest of the weekend...I can't even get started on the way Dr W the First treated me--cruel and as if I were a liar.)
Acupuncture
Massage Therapy (the first time focused on the muscles and left me feeling WONDERFUL; the second time was with a different masseuse who specialized in some TMJ massage that was suppose to drain the lymph nodes. She massaged inside my mouth, which I wasn't too crazy about. On the way home, I continued to feel worse and worse; it took a week to get over the pain that lady caused.)
Splint Therapy (I wear it only at night and whenever doing mundane tasks...or if it just hurts.)
Applications of ice and heat (Ice works more for me than heat)
At the moment, I'm not too thrilled with the newest doctor I've been to, who specializes in Pain Management. She's never treated anyone with TMJ, the first fact that makes me rather leery of her abilities to help me. Secondly, she wants to work me off of ALL my medications, then stick me with a narcotic patch. I know for a fact that narcotics alone do not alleviate my pain and I told her so, but she just replied that I should let her do her job. As it is, the medication she's working me onto, Gabitril, reminds me of the days when I first began Neurontin...and I don't like it. As it is, I can function normally with Neurontin and Baclofen, though the medication tends to feel like it's wearing off 1-2 hours before my next dose.
I don't know what to do...and in the end, the fate of my jaw is always in my hands.
BLACKdragon78
06-20-2004, 12:24 AM
Alisha,
I've tried just about everything too. Yes, I do agree ice definetely works best. From what I hear it takes a long time for physical therapy to work. I've seen a physical therapist a couple of times even though it makes my symptoms worse. I'm hoping that my muscles will gradually start working properly. Anyhow, neurontin does wear off within a couple of hours so my doctor has told me to take neurontin in the morning, afternoon, and night. It works ok. and as for my splint I still only wear it at night even though I was told to try and wear it during the day. Well I might have to go get another splint soon because my splint has two more holes in it. YIKES!!
:rolleyes:
As for surgery, I'm really not even going to think about it. That is the one thing I like about the specialist I see. I can tell he cares because he takes the time to tell me all the other options and how each one works. He has never mentioned surgery to me except for when I first met him and he was going over the different treatments, even then he told me the risks involved with surgery and that he only recommends it under very very extreme circumstances.
I've tried just about everything too. Yes, I do agree ice definetely works best. From what I hear it takes a long time for physical therapy to work. I've seen a physical therapist a couple of times even though it makes my symptoms worse. I'm hoping that my muscles will gradually start working properly. Anyhow, neurontin does wear off within a couple of hours so my doctor has told me to take neurontin in the morning, afternoon, and night. It works ok. and as for my splint I still only wear it at night even though I was told to try and wear it during the day. Well I might have to go get another splint soon because my splint has two more holes in it. YIKES!!
:rolleyes:
As for surgery, I'm really not even going to think about it. That is the one thing I like about the specialist I see. I can tell he cares because he takes the time to tell me all the other options and how each one works. He has never mentioned surgery to me except for when I first met him and he was going over the different treatments, even then he told me the risks involved with surgery and that he only recommends it under very very extreme circumstances.
Alisha
06-21-2004, 05:28 PM
I can hardly hold a conversation for very long without experiencing pain, so just the thought of physical therapy makes me cringe. I take Neurontin 4 times a day--morning, afternoon, evening, and before bed. (Or however it works due to the time of day I wake up.) My splint is the best thing. I use it whenever nothing else helps to alleviate the pain (and also at night). Surgery is probably going to be put on hold, which my mother is completely furious about because she thinks it will make me feel better. Of course, she forgets how often she complains that her knee hurts more now that it's been operated on than it did before. Go figure.
BLACKdragon78
06-22-2004, 12:31 AM
Ya, I hardly ever talk anymore because of the pain. Brushing my teeth really makes it painful. I hate going to the dentist because I tell them I have TMJ and they look at me like they have never heard of it before. Anyhow, did you say you're starting college? I wish you the best of luck :wave: