WillsMamma
08-21-2008, 03:24 PM
My TMJ doctor's visit was very tramatic for me. The consultation took 3 hours! I was very sad and depressed when I got home. I just cried and cried. This doctor wants to do 3 years of work on my mouth that in the end may not improve anything according to websites I've read. He says the paitents that write this were not treated by him and probably didn't have Phase 2 of the proceedure done. He's is supposedly one of the best and treats famous singers, celebrities and people fly in from out of state to see him, etc... He's also retirement age. If I let him start on my mouth I worry he'll probably retire in the middle of it. He says he has a protege that's been doing it with him for 10 years, however.
He says I definitely have TMJ in both hinges of my jaw. He tells me if he does what he wants to that my jaw will no longer lock, pop, and that my 25+ year headache plus a lot of other pain problems with eating, singing and in my neck and shoulders will magicly go away or get much better and that there is no chance of anything getting worse. The websites say that I could get worse, get better or stay the same with every treatment that's out there.
He wants me to: 1. wear a splint in my mouth all my waking hours for 9 months to totally rearrange all my teeth to an abnormal bite to give me relief. He wants my top and bottom front teeth to sit on top of each other permently. Doing this will permently alter my bite. There's no going back. At the end of the 9 months my back teeth will not touch. I will not be able to eat much of anything will I?
2. then he wants to do 2 years of braces, caps, etc... to straighten my teeth again and make my back two teeth meet or I can wear a dental denture bridge. 3. If all this doesn't improve my condition enough there's always surgery to improve it some more according to him. All this costs a ton of money. My insurance may not cover it.
To be honest I don't want to do it. I wish my jaw was normal. But he kind of scared me saying that if my jaw locks and doesn't unlock there's not a lot me can do for me at that point. I'm afraid my problem will get worse and I'll regret paying him to change my mouth permenently. Also I've been through years of braces, spacers, retainers, teeth removals etc. when I was young (before I had TMJ) and it is very painful and a headache to go through all that.
I've been living with my problem since I was 12 and I'm 33 now. I don't have much pain, but the doc says I don't know what's abnormal and it hurts badly when he touches my shoulder and neck area and the back of my head has hurt since 13 (he says that's a headache). I had an episode of diagnosed and treated debilitating migraines at 25 for about 3 years, and they went away. I still have tons of headaches, but only a few migraines. I didn't associate all the headaches for all these years with TMJ. Yes it hurts to chew chewy thinks and I have some jaw pain, yes I've had horrid headaches on and off for 2 decades, yes I have tinnitus, and bruxism, but I know what that's like. I don't know the unknown and these are things I've been able to live with. I'm scared of making myself worse off. My jaw just began locking closed when I awaken in the last month. What's your advice? Do I need a second opinion? Is there really not much that can be done if I wait until my jaw locks and doesn't unlock? I'm also planning on trying for baby #2. What about eating for baby if I get treated and will this be more stressful on me with a possible addition of fertility treatments (we had to have for baby one and may for our next)? This is the 1st time I've actually been diagnosed with TMJ, but I've really known I've had it for a long time.
He says I definitely have TMJ in both hinges of my jaw. He tells me if he does what he wants to that my jaw will no longer lock, pop, and that my 25+ year headache plus a lot of other pain problems with eating, singing and in my neck and shoulders will magicly go away or get much better and that there is no chance of anything getting worse. The websites say that I could get worse, get better or stay the same with every treatment that's out there.
He wants me to: 1. wear a splint in my mouth all my waking hours for 9 months to totally rearrange all my teeth to an abnormal bite to give me relief. He wants my top and bottom front teeth to sit on top of each other permently. Doing this will permently alter my bite. There's no going back. At the end of the 9 months my back teeth will not touch. I will not be able to eat much of anything will I?
2. then he wants to do 2 years of braces, caps, etc... to straighten my teeth again and make my back two teeth meet or I can wear a dental denture bridge. 3. If all this doesn't improve my condition enough there's always surgery to improve it some more according to him. All this costs a ton of money. My insurance may not cover it.
To be honest I don't want to do it. I wish my jaw was normal. But he kind of scared me saying that if my jaw locks and doesn't unlock there's not a lot me can do for me at that point. I'm afraid my problem will get worse and I'll regret paying him to change my mouth permenently. Also I've been through years of braces, spacers, retainers, teeth removals etc. when I was young (before I had TMJ) and it is very painful and a headache to go through all that.
I've been living with my problem since I was 12 and I'm 33 now. I don't have much pain, but the doc says I don't know what's abnormal and it hurts badly when he touches my shoulder and neck area and the back of my head has hurt since 13 (he says that's a headache). I had an episode of diagnosed and treated debilitating migraines at 25 for about 3 years, and they went away. I still have tons of headaches, but only a few migraines. I didn't associate all the headaches for all these years with TMJ. Yes it hurts to chew chewy thinks and I have some jaw pain, yes I've had horrid headaches on and off for 2 decades, yes I have tinnitus, and bruxism, but I know what that's like. I don't know the unknown and these are things I've been able to live with. I'm scared of making myself worse off. My jaw just began locking closed when I awaken in the last month. What's your advice? Do I need a second opinion? Is there really not much that can be done if I wait until my jaw locks and doesn't unlock? I'm also planning on trying for baby #2. What about eating for baby if I get treated and will this be more stressful on me with a possible addition of fertility treatments (we had to have for baby one and may for our next)? This is the 1st time I've actually been diagnosed with TMJ, but I've really known I've had it for a long time.
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pipdog
08-21-2008, 06:02 PM
Your proposed treatment plan and mine sound very similar. Sounds like your dentist thinks your lower jaw is too far back.
I wear a lower repositioning splint which has moved my jaw down and forward. This is to decompress the jaw joints and create space When I take it out to brush only my front teeth contact in an edge to edge position, no contact on the back teeth at all. He calls this Phase 1, letting the splint create a new physiologically healthy bite with the tmjs where they should be. Don't worry about eating with the splint, maybe the first week will be a bit weird but you will totally get used to it, just stay away from steaks and crusty bread and make a habit of cutting food into small pieces so there is less chewing going on.
Phase 2 is making permanent the bite changes that the splint has created, crowns or braces usually.
I know it can be hard when you are faced with the diagnosis but knowing is better than not knowing and means you can get the right treatment instead of going from doctor to doctor in an endless circle. You do need to get treatment, this condition is progressive if you don't do anything about it.
Good luck with the treatment - the guy sounds like he knows what he is doing
Pipdog
I wear a lower repositioning splint which has moved my jaw down and forward. This is to decompress the jaw joints and create space When I take it out to brush only my front teeth contact in an edge to edge position, no contact on the back teeth at all. He calls this Phase 1, letting the splint create a new physiologically healthy bite with the tmjs where they should be. Don't worry about eating with the splint, maybe the first week will be a bit weird but you will totally get used to it, just stay away from steaks and crusty bread and make a habit of cutting food into small pieces so there is less chewing going on.
Phase 2 is making permanent the bite changes that the splint has created, crowns or braces usually.
I know it can be hard when you are faced with the diagnosis but knowing is better than not knowing and means you can get the right treatment instead of going from doctor to doctor in an endless circle. You do need to get treatment, this condition is progressive if you don't do anything about it.
Good luck with the treatment - the guy sounds like he knows what he is doing
Pipdog
nynavey
08-21-2008, 11:23 PM
WillsMama, I am so glad you posted here. To begin with, I see you are from Nashville, as am I. Any chance this 3 hour consultation was with a Dr. Simmons? If so, we have the same dentist, and yes that initial appointment was chock full of info and very grilling if you ask me.
BUT, your treatment options and some of your symptoms sound a lot like mine. I haven't been terribly concerned with my jaws until the last year or so, when the heaches began. After trying all kinds of things for those, including visiting an ENT regularly to work on my sinuses, it was suggested I see a specialist about TMJ because my lower jaw is very far back. IN other words, my overbite was very bad and getting worse.
I was skeptical of that first visit and probably answered a lot of the questions wrong because my idea of "pain" wasn't really anything horrible or debilitating. Clicking and popping I could live with, and have all my life. But when the doctor started pressing on key points in my neck, shoulders, and even down the middle of my back, I nearly jumped out of the chair in serious pain. He made it clear to me that that is NOT normal...and what I've been living with for 30+ years isn't normal either.
I got my day and night splints a week ago yesterday, and while it's taken some getting sued to, the biggest thing I have noticed, the most amazing thing of all, is how much less my neck and shoulders are hurting. I can touch the sides of my neck without flinching. My husband can rub my shoulders without me gasping in pain - and these are things that I never considered odd before! There shouldn't be any pain when you touch healthy parts of the body, right? Well believe me, I am seeing that now. I commented to my family how I am absolutely floored at how much tension I've been carrying around - so much that I'd incorporated it into my daily life and didn't even consider it uncomfortable! Does any of this ring true with you?
The word is out on how much this will affect my headaches, but if all I ever gain back is freedom from muscle pain, I think I will have gained more than I lost in wearing a splint and spending the money. I didn't realize other people walk around like this, and why haven't I done this sooner? You might not have the same experience, but I certainly hope you get such relief so quickly if you elect to have this too.
I will be in the splints 24/7 for about 9 - 12 months, long enough for the tendons and tissue to shrink back up to where they should have been all along. Then Phase II will begin which are braces to put my teeth in a position that mimics what these splints have falsified. As long as the joints are held in place, the muscles won't spasm and nerves won't get pinched, at least that's it in theory. If I don't get braces, my jaw will go right back to where it was because the muscles have already been weakened by years of poor alignment. I am on strict orders that under no circumstances should I close my mouth without something in it...to prevent the back teeth from closing. He would probably tell you the same thing. If you are having locking problems, those are more serious and can be more costly to fix if you have another lock. You also don't want to get arthritis in the joints later on, and if they are healthy that might be less likely.
It's expensive and while my insurance will cover some of it, a lot of it will be out of pocket for me. But I am desperate to find an answer, and you sound very similar in this. Try not to look at this as a dead end - look at it as an opportunity. I know one of Dr. Simmons' long term patients who is about to start the PHase II part, and she has had amazing success with it. IF we are talking about the same doctor, I am starting to have a lot more faith in him than originally. Of course this is an individual choice, and no one can tell you the right thing to do. He cannot guarantee you will have success either, but he can show you what he has accomplished with others and how the process works. I am gambling with his advice, but I feel I've run out of options. It made sense to me when he explained how the muscles overcompensate, and then things started clicking in my mind that this is simple, but long-term. There will always be those who have had no success, whether due to their circumstances, or their commitment to therapy. Do your research and listen to your instincts, that's what I say.
Please keep asking questions here. I"ve found this group very supportive and informative. Wouldn't it be interesting if we have the same dentist!
BUT, your treatment options and some of your symptoms sound a lot like mine. I haven't been terribly concerned with my jaws until the last year or so, when the heaches began. After trying all kinds of things for those, including visiting an ENT regularly to work on my sinuses, it was suggested I see a specialist about TMJ because my lower jaw is very far back. IN other words, my overbite was very bad and getting worse.
I was skeptical of that first visit and probably answered a lot of the questions wrong because my idea of "pain" wasn't really anything horrible or debilitating. Clicking and popping I could live with, and have all my life. But when the doctor started pressing on key points in my neck, shoulders, and even down the middle of my back, I nearly jumped out of the chair in serious pain. He made it clear to me that that is NOT normal...and what I've been living with for 30+ years isn't normal either.
I got my day and night splints a week ago yesterday, and while it's taken some getting sued to, the biggest thing I have noticed, the most amazing thing of all, is how much less my neck and shoulders are hurting. I can touch the sides of my neck without flinching. My husband can rub my shoulders without me gasping in pain - and these are things that I never considered odd before! There shouldn't be any pain when you touch healthy parts of the body, right? Well believe me, I am seeing that now. I commented to my family how I am absolutely floored at how much tension I've been carrying around - so much that I'd incorporated it into my daily life and didn't even consider it uncomfortable! Does any of this ring true with you?
The word is out on how much this will affect my headaches, but if all I ever gain back is freedom from muscle pain, I think I will have gained more than I lost in wearing a splint and spending the money. I didn't realize other people walk around like this, and why haven't I done this sooner? You might not have the same experience, but I certainly hope you get such relief so quickly if you elect to have this too.
I will be in the splints 24/7 for about 9 - 12 months, long enough for the tendons and tissue to shrink back up to where they should have been all along. Then Phase II will begin which are braces to put my teeth in a position that mimics what these splints have falsified. As long as the joints are held in place, the muscles won't spasm and nerves won't get pinched, at least that's it in theory. If I don't get braces, my jaw will go right back to where it was because the muscles have already been weakened by years of poor alignment. I am on strict orders that under no circumstances should I close my mouth without something in it...to prevent the back teeth from closing. He would probably tell you the same thing. If you are having locking problems, those are more serious and can be more costly to fix if you have another lock. You also don't want to get arthritis in the joints later on, and if they are healthy that might be less likely.
It's expensive and while my insurance will cover some of it, a lot of it will be out of pocket for me. But I am desperate to find an answer, and you sound very similar in this. Try not to look at this as a dead end - look at it as an opportunity. I know one of Dr. Simmons' long term patients who is about to start the PHase II part, and she has had amazing success with it. IF we are talking about the same doctor, I am starting to have a lot more faith in him than originally. Of course this is an individual choice, and no one can tell you the right thing to do. He cannot guarantee you will have success either, but he can show you what he has accomplished with others and how the process works. I am gambling with his advice, but I feel I've run out of options. It made sense to me when he explained how the muscles overcompensate, and then things started clicking in my mind that this is simple, but long-term. There will always be those who have had no success, whether due to their circumstances, or their commitment to therapy. Do your research and listen to your instincts, that's what I say.
Please keep asking questions here. I"ve found this group very supportive and informative. Wouldn't it be interesting if we have the same dentist!
MissHeadache
08-22-2008, 07:43 AM
Your treatment plan sounds similar to mine too. Don't worry!
luvtocamp
08-22-2008, 12:34 PM
Yes it kinda sounds like the normal treatment. Did he do an mri or xrays of your joints or just palpated them. I'm on my third tmj dentist. They all think of things differently.
I guess what I'm asking is is just that your lower jaw is too far back now?
Do you have displaced disc? What is the diagnois he gave you?
I'm kinda at a point of not knowing what to do, splints didn't help me, but I wear an upper and lower partial. One dentist made a splint to push my jaw back, sencond made one to pull my jaw forward (way to much I think) and right now I'm just wearing a lower partial with no teeth, and thats not helping much either. I have been getting cranial osteopathic treatments for 2 years too.
I guess I would opt of a second consult before starting treatment although he sounds like a top of the line tmj doctor, but I've been going to good ones too.
I guess what I'm asking is is just that your lower jaw is too far back now?
Do you have displaced disc? What is the diagnois he gave you?
I'm kinda at a point of not knowing what to do, splints didn't help me, but I wear an upper and lower partial. One dentist made a splint to push my jaw back, sencond made one to pull my jaw forward (way to much I think) and right now I'm just wearing a lower partial with no teeth, and thats not helping much either. I have been getting cranial osteopathic treatments for 2 years too.
I guess I would opt of a second consult before starting treatment although he sounds like a top of the line tmj doctor, but I've been going to good ones too.
WillsMamma
08-23-2008, 05:09 PM
Yes, NYNavey my consult was with Dr. Simmons. I had a lot of dental work when I was younger to correct an overbite,and get rid of crowding. My mouth was too small for all my teeth so I had several permanant teeth removed. My lower jaw is not too far back as far as placement, but not alingned well side to side. Actually Dr. Simmons and I believe that my problems started with getting all my wisdom teeth out a once before they came out of the gums. My two bottom teeth were pushed a little forward as they began to emerge and my parents didn't want all that expensive dental work messed up. When I awoke from the surgery I heard a loud click, then a pop. My jaw's been popping ever since. Then Dr. Simmons and I believe my TMJ got worse when I fell with full body force on my chin while ice skating a few years later.
Dr. Simmons says that I will get better. Maybe not 100%, but that I will get better. My fear is that I'll get worse from doing this. He says there's no chance on that.
Do you think I can do this and go through infertility treatments and/or be pregnant? Is it very painful and has it affected your eating much? How about your talking has the splint affected your talking?
Thanks,
Anna
Dr. Simmons says that I will get better. Maybe not 100%, but that I will get better. My fear is that I'll get worse from doing this. He says there's no chance on that.
Do you think I can do this and go through infertility treatments and/or be pregnant? Is it very painful and has it affected your eating much? How about your talking has the splint affected your talking?
Thanks,
Anna
nynavey
08-24-2008, 02:17 PM
I'm really new into the treatment, but so far (in 2 weeks) the splints haven't been painful other than making the muscles of my jaw and face tired at the end of the day, and knotting up a bit the first couple of days. That has abated now that I'm more used to the splint in the daytime. My nighttime split has been very tight and I tend to clench my teeth together with it in - causing muscle tension at night. But I've been using a heating pad with that and it is getting easier to naturally relax when I have the nighttime one in.
As for speaking, yes my speech is affected. It was pretty bad the first night, with S and 'ch' sounds really awful. The next day it wasn't much better, but my family could tell by the end of the day when I sounded worse that I was more tired than in the morning. I don't think it improved a lot the first week, but now it's much easier to speak clearly. I have found I must speak slower than before on some words - get excited and the slurs start coming out. Sounds like a mild lisp. This may depend on the size of the splint, so I'd imagine it's individual. When people start asking me to repeat myself (because they didn't understand), I gently explain that I'm having tmj therapy and am wearing a 'retainer' or 'appliance' and then they go on and stop looking at me with a questioning expression.
I don't know how this would affect pregnancy other than possible pain/muscle fatigue every time you have a splint adjusted (once a month) for a few days, and possibly some trouble eating when adjusted too. I stuck to liquids for a couple of days, then soft foods, and am only now eating chicken. Haven't tried steak. Did you get a chance to ask Dr. Simmons about a future pregnancy? If it works as well as it should, you might have a better opportunity to conceive and carry simply because you will be getting rid of the pain/tension/discomfort you've been carrying around all this time. I am truly, truly amazed at how much energy I must've been wasting because of my jaws - my neck and shoulders feel so much better. You may find the same thing.
If you decide to do this, the 2nd visit will be 2 fold in that you'll get dozens of Xrays from all kinds of positions, and they'll make molds of your teeth - several. It was the most uncomfortable I've been in awhile because of pulling your jaws open a lot and manipulation. Be prepared for that. I wish I'd taken some iburprofen or something for headache before I went in for it. But I am becoming a heat-convert as far as medication goes...heating pads seem to work so much better on that for me since getting the splints.
I wish you well in this!
As for speaking, yes my speech is affected. It was pretty bad the first night, with S and 'ch' sounds really awful. The next day it wasn't much better, but my family could tell by the end of the day when I sounded worse that I was more tired than in the morning. I don't think it improved a lot the first week, but now it's much easier to speak clearly. I have found I must speak slower than before on some words - get excited and the slurs start coming out. Sounds like a mild lisp. This may depend on the size of the splint, so I'd imagine it's individual. When people start asking me to repeat myself (because they didn't understand), I gently explain that I'm having tmj therapy and am wearing a 'retainer' or 'appliance' and then they go on and stop looking at me with a questioning expression.
I don't know how this would affect pregnancy other than possible pain/muscle fatigue every time you have a splint adjusted (once a month) for a few days, and possibly some trouble eating when adjusted too. I stuck to liquids for a couple of days, then soft foods, and am only now eating chicken. Haven't tried steak. Did you get a chance to ask Dr. Simmons about a future pregnancy? If it works as well as it should, you might have a better opportunity to conceive and carry simply because you will be getting rid of the pain/tension/discomfort you've been carrying around all this time. I am truly, truly amazed at how much energy I must've been wasting because of my jaws - my neck and shoulders feel so much better. You may find the same thing.
If you decide to do this, the 2nd visit will be 2 fold in that you'll get dozens of Xrays from all kinds of positions, and they'll make molds of your teeth - several. It was the most uncomfortable I've been in awhile because of pulling your jaws open a lot and manipulation. Be prepared for that. I wish I'd taken some iburprofen or something for headache before I went in for it. But I am becoming a heat-convert as far as medication goes...heating pads seem to work so much better on that for me since getting the splints.
I wish you well in this!
WillsMamma
08-26-2008, 04:36 PM
Thanks! I'm waiting on word from the insurance, which may take a month to see if we can afford to do this and I may get a second opinion too. I'm not sure. The thing that really sounds great from Dr. Simmons is getting my smile back. I really don't like my teeth the way they are with all the wear and he would fix that at the end of treatment, actually making my front teeth normal size again.