cally22
11-19-2003, 04:20 PM
Hi, this is cally22, and I know it has been a while since I have posted, but my life has been incredibly busy and painful. Today, and really for the past week my tmj has been getting me a little down. It just really hurts. And I know I need to see my oral surgeon , but I just keep putting it off because everytime I go it is the same thing; that he doesn't know what he can do anymore. So what is the use? I'm really hurting, and my one side won't stop getting "stuck" and that just plainly hurts when you try to get it unstuck and it cracks/ pops.... Ughhhhh...... Any suggestions or help, I know I need to do something but lack the direction, and I'm not trying to give myself an excuse , but I'm still a teenager, and I just feel so lost and confused about what to do... thanks for listening, and for anybody who might be able to help me! Cally22.
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saaraah
11-19-2003, 07:21 PM
i know how you feel 100%, and it's horrible. i cant remember how many times ive been told by health professionals that there's nothing else that can be done for me. altho, i do remember the first time my family doctor said that to me - i was about 17 or 18, and i thought it was the end of the world.
however, i have always been able to find another treatment to try whether it was medication, some type of massage/physical therapy, osteopathy, or various types of splints.
when you find that your dentist [or oral surgeon, in your case] is telling you that there's nothing else that *he* can do for you, it's definitely time to look for someone else who can provide you with help.
forgive me, but what type of treatment are you going thru right now?
currently, im wearing an anterior repositioning splint, and it's been giving me some considerable relief.
take care and it's okay to feel the way you do - it's tough being young and in pain.
*hugs*
- saaraah.
however, i have always been able to find another treatment to try whether it was medication, some type of massage/physical therapy, osteopathy, or various types of splints.
when you find that your dentist [or oral surgeon, in your case] is telling you that there's nothing else that *he* can do for you, it's definitely time to look for someone else who can provide you with help.
forgive me, but what type of treatment are you going thru right now?
currently, im wearing an anterior repositioning splint, and it's been giving me some considerable relief.
take care and it's okay to feel the way you do - it's tough being young and in pain.
*hugs*
- saaraah.
cally22
11-20-2003, 05:51 PM
Dear Sarah,
Thank you for replying, your words are encouraging. I think I've known for a little while that it was time to move on from my oral surgeon, but I just hesitated, b/c asa younger person I kind of don't know where to start.
Currently, my oral surgeon has me in a bite splint. But I have been using it for over a year now, (probably a year and a half) and well, in the beginning it helped but now it really doesn't, but I don't have anything else that helps even a little, so I just continue with this. (I've done the pain meds before, and i just cannot stand being a zombie. I have to function in this world like a somewhat normal person, and i am unable to do so with pain meds on board, otherwise I would try that again.) ( I can't even take anti- inflamatories, b/c no doctor will prescribe one for me b/c everytime they do, I have an allergic reaction. My body doesn't tolerate them well.) So...... Yes I do believ I need to go to see someone else, but I'm clueless as to where to go next??
Once again thank you Cally22!
Thank you for replying, your words are encouraging. I think I've known for a little while that it was time to move on from my oral surgeon, but I just hesitated, b/c asa younger person I kind of don't know where to start.
Currently, my oral surgeon has me in a bite splint. But I have been using it for over a year now, (probably a year and a half) and well, in the beginning it helped but now it really doesn't, but I don't have anything else that helps even a little, so I just continue with this. (I've done the pain meds before, and i just cannot stand being a zombie. I have to function in this world like a somewhat normal person, and i am unable to do so with pain meds on board, otherwise I would try that again.) ( I can't even take anti- inflamatories, b/c no doctor will prescribe one for me b/c everytime they do, I have an allergic reaction. My body doesn't tolerate them well.) So...... Yes I do believ I need to go to see someone else, but I'm clueless as to where to go next??
Once again thank you Cally22!
saaraah
11-20-2003, 10:45 PM
do you mind saying where abouts you live? perhaps someone on this forum is in your area, and could refer you to a good dentist that they trust.
other than that, im not sure what to suggest. :) this forum helped me find my current dentist, and his treatment has helped. mind you, the search has been long -- ive seen almost 25 various health professionals in my search for relief.
oh, have you tried massage therapy for shortterm pain relief?
take care,
- saaraah.
other than that, im not sure what to suggest. :) this forum helped me find my current dentist, and his treatment has helped. mind you, the search has been long -- ive seen almost 25 various health professionals in my search for relief.
oh, have you tried massage therapy for shortterm pain relief?
take care,
- saaraah.
Cymy Sue
11-22-2003, 06:11 AM
Cally,
Are you in the same splint that you had prior to your discectomy or one that was made right after?
I was thinking your surgery was about a year ago???
I know it's hard to keep looking, but your splint may not be right for you now.
A year after a discectomy, you have had some major changes. Without discs, the muscles will compensate and reposition due to this change in your anatomy.
I was only made aware of this a year ago and my former surgeon did not explain this to me, my Dentist did.
It's becoming more common for Dentist to work with people who have had surgery, including discectomies. One problem that many don't seem to recognize is, without disc, the normal type splints are too thick.
Without disc, we can not tolerate very much thickness between our teeth.
I don't remember if you have described your splint before, but it may be too thick. Even a few milimeters can make a big difference.
Maybe finding a Dentist who has worked with people without disc or severely damaged joints due to disease, would help. If you can't find one who knows exactly what to do, maybe he could consult with another one that does.
My splint was based on those made for people with disc and joints damaged by diseases such as rheumatoid and osteo arthritis. It was then adjusted in theory for someone without disc. The first consideration was that it would have to be extremely thin. There was a lot more technical stuff taken into consideration.
This splint specifically designed for someone after a discectomy has worked beyond anything I could have ever believed.
The first year or so after a discectomy is pretty rough regardless of what you do. After you have healed, I truly believe someone can help you with the problems you're having.
It was my experience that after the surgery, you're just left with taking meds or suffering. Surgeons did not help me at all after it was done. They told me for nearly 5 years, it was meds or suffer.
When I went to someone who was interested in helping me and took the time needed to figure out what would help, I got better.
I'm living without disc, several prior surgeries that caused damage and have only very minor problems. Almost none compared to before.
Cymy Sue
Are you in the same splint that you had prior to your discectomy or one that was made right after?
I was thinking your surgery was about a year ago???
I know it's hard to keep looking, but your splint may not be right for you now.
A year after a discectomy, you have had some major changes. Without discs, the muscles will compensate and reposition due to this change in your anatomy.
I was only made aware of this a year ago and my former surgeon did not explain this to me, my Dentist did.
It's becoming more common for Dentist to work with people who have had surgery, including discectomies. One problem that many don't seem to recognize is, without disc, the normal type splints are too thick.
Without disc, we can not tolerate very much thickness between our teeth.
I don't remember if you have described your splint before, but it may be too thick. Even a few milimeters can make a big difference.
Maybe finding a Dentist who has worked with people without disc or severely damaged joints due to disease, would help. If you can't find one who knows exactly what to do, maybe he could consult with another one that does.
My splint was based on those made for people with disc and joints damaged by diseases such as rheumatoid and osteo arthritis. It was then adjusted in theory for someone without disc. The first consideration was that it would have to be extremely thin. There was a lot more technical stuff taken into consideration.
This splint specifically designed for someone after a discectomy has worked beyond anything I could have ever believed.
The first year or so after a discectomy is pretty rough regardless of what you do. After you have healed, I truly believe someone can help you with the problems you're having.
It was my experience that after the surgery, you're just left with taking meds or suffering. Surgeons did not help me at all after it was done. They told me for nearly 5 years, it was meds or suffer.
When I went to someone who was interested in helping me and took the time needed to figure out what would help, I got better.
I'm living without disc, several prior surgeries that caused damage and have only very minor problems. Almost none compared to before.
Cymy Sue
cally22
11-24-2003, 06:19 PM
Dear Cmy Sue,
I didn't even think of the possibility of my splint not being, "right".... But now that I think of it, It possibly could be some of the source of my problem. My oral surgeon made it before my surgery, and didn't give it to me until after. It is a hard plastic ( I guess that is what they use) and it is pretty thick; especially in the front, and tapers off slightly in the sides.
I just wanted to say that what you said about you're oral surgeon saying it was either pain meds,or just basiclly suffer; that sounds so like a duplicate of my experience. You telling me this helped me, to feel as if i wasn't alone in this overcast, "tmj nightmare."
I really wish I knew of a dentist that was experienced in tmj disectomy patients.. My dentist unfortunately isn't. She knows a little about tmj, but when my tmj problems first started, she immediately sent me to an oral surgeon. I guess what I am trying to say, is I have no idea where even to begin to look, or even to start!
thank you so much, and any other advice to help me would be greatly appreciated.. Your words have already helped me to realize things I didn't see before!
Cally22.
I didn't even think of the possibility of my splint not being, "right".... But now that I think of it, It possibly could be some of the source of my problem. My oral surgeon made it before my surgery, and didn't give it to me until after. It is a hard plastic ( I guess that is what they use) and it is pretty thick; especially in the front, and tapers off slightly in the sides.
I just wanted to say that what you said about you're oral surgeon saying it was either pain meds,or just basiclly suffer; that sounds so like a duplicate of my experience. You telling me this helped me, to feel as if i wasn't alone in this overcast, "tmj nightmare."
I really wish I knew of a dentist that was experienced in tmj disectomy patients.. My dentist unfortunately isn't. She knows a little about tmj, but when my tmj problems first started, she immediately sent me to an oral surgeon. I guess what I am trying to say, is I have no idea where even to begin to look, or even to start!
thank you so much, and any other advice to help me would be greatly appreciated.. Your words have already helped me to realize things I didn't see before!
Cally22.
Michelle W
11-25-2003, 11:30 PM
Cally22,
I was also wondering if you have seen a pain management specialist? I wondered if they might be able to help you without making you feel so drugged out. I have not seen one myself, but it was just a thought that came to me while reading your post.
I think I saw in another post that you have had arthroplasty prior to your disc removal. I was wondering if you knew why that surgery failed? I recently underwent arthroplasty in March of this year.
Thanks,
Michelle
I was also wondering if you have seen a pain management specialist? I wondered if they might be able to help you without making you feel so drugged out. I have not seen one myself, but it was just a thought that came to me while reading your post.
I think I saw in another post that you have had arthroplasty prior to your disc removal. I was wondering if you knew why that surgery failed? I recently underwent arthroplasty in March of this year.
Thanks,
Michelle
cally22
11-26-2003, 09:28 AM
Dear Michelle W,
Thank you for your post, I appreciate all help I can get.
To answer your questions, yes I have seen a pain management specialist, and unfortunately that experience has totally made me even more wary and cautious about pain meds, b/c they just kept giving me really strong pain meds, and I became someone I didn't know. I lost all ability to concentrate, and literally was a zombie. And unfortunately as a high school student, you can't be that way if you want to make good grades, or even pass. Some other people might have had a better experience with these doctors, I'm not sure, but all I know is that my experience was far from that, and I don't think I could ever go back to one of these specialists and trust them again..
Also yes, I did have an arthroplasty before my disectomy. It helped, I guess somewhat for about 5 months, but then my problems started to return, twice as bad. My oral surgeon said that my ( arteriorly displaced disc without reduction) just, was giving me too many problems, and that when I tried to open my mouth it would get caught so I couldn't open my mouth, causing me great pain, and that if he took the disc out I wouldn't have to worry about that anymore, and that my pain would reduce. ( I would still have my good and bad days though, and I couldn't eat hard foods, or chewy foods, because that would just aggrivate my tmj, and make things worse.) Unfortunately I was in so much pain that I was willing to try anything, so I did. And that surgery hasn't helped me much either...
Thank you once again, you have really a good suggestion; but unfortunately I couldn't ever go back to one of these physicians. Good luck with your tmj. Cally22!
Thank you for your post, I appreciate all help I can get.
To answer your questions, yes I have seen a pain management specialist, and unfortunately that experience has totally made me even more wary and cautious about pain meds, b/c they just kept giving me really strong pain meds, and I became someone I didn't know. I lost all ability to concentrate, and literally was a zombie. And unfortunately as a high school student, you can't be that way if you want to make good grades, or even pass. Some other people might have had a better experience with these doctors, I'm not sure, but all I know is that my experience was far from that, and I don't think I could ever go back to one of these specialists and trust them again..
Also yes, I did have an arthroplasty before my disectomy. It helped, I guess somewhat for about 5 months, but then my problems started to return, twice as bad. My oral surgeon said that my ( arteriorly displaced disc without reduction) just, was giving me too many problems, and that when I tried to open my mouth it would get caught so I couldn't open my mouth, causing me great pain, and that if he took the disc out I wouldn't have to worry about that anymore, and that my pain would reduce. ( I would still have my good and bad days though, and I couldn't eat hard foods, or chewy foods, because that would just aggrivate my tmj, and make things worse.) Unfortunately I was in so much pain that I was willing to try anything, so I did. And that surgery hasn't helped me much either...
Thank you once again, you have really a good suggestion; but unfortunately I couldn't ever go back to one of these physicians. Good luck with your tmj. Cally22!
Michelle W
11-27-2003, 03:19 AM
I am so sorry that you can't find any relief. I do think that Cymy Sue's idea of a different splint is a good idea since it has helped her so much.
I am just throwing out another idea to you. Have you seen a neurologist? I am planning to see one next month because my Neurontin helps some, but I still have a lot of buring/pain. I am hoping that maybe he can give me a combination of medication to help me out with the nerve pain. I figure he may know more about nerve pain that other doctors. Also, my OS did prescribe what is called a lidocaine patch that is time released. It does help me some. Although, I cut it into a very small rectangle and put right in front of my ear. I wear my hair forwards so it isn't as noticeable. I am glad I didn't cut my hair short like I planned to a couple of months ago. Maybe you could just buy one and try it out. It is just a thought. It doesn't affect you like pain meds.
I totally understand about the school issue. I am wanting to go back to college next semester and get a degree. I am wondering how I will manage with pain and school. It is a scary thought for me at this time.
I will keep you in my prayers. You sound very strong and I admire that in you. My OS did tell me that it may just take a long time to heal. Please keep in touch.
Thanks,
Michelle
I am just throwing out another idea to you. Have you seen a neurologist? I am planning to see one next month because my Neurontin helps some, but I still have a lot of buring/pain. I am hoping that maybe he can give me a combination of medication to help me out with the nerve pain. I figure he may know more about nerve pain that other doctors. Also, my OS did prescribe what is called a lidocaine patch that is time released. It does help me some. Although, I cut it into a very small rectangle and put right in front of my ear. I wear my hair forwards so it isn't as noticeable. I am glad I didn't cut my hair short like I planned to a couple of months ago. Maybe you could just buy one and try it out. It is just a thought. It doesn't affect you like pain meds.
I totally understand about the school issue. I am wanting to go back to college next semester and get a degree. I am wondering how I will manage with pain and school. It is a scary thought for me at this time.
I will keep you in my prayers. You sound very strong and I admire that in you. My OS did tell me that it may just take a long time to heal. Please keep in touch.
Thanks,
Michelle
cally22
11-28-2003, 12:08 PM
dear Michelle W,
thank you so much. Your supportive words are so helpful. Sometimes its hard to get through a day, and when I see that there are others dealing with this problem, and they are so caring, and they try to help others, it just does my heart good.
I actually tried the lidoderm patch before, ( with pain management), unfortunately it wasn't all that helpful. ( it helped some in the beginning, but that little relief didn't last long..) I also have seen a neurologist, for carpal tunnel, tmj, and headaches. He prescribed topamax, and more pain meds. And I recently had a bad experience with the topamax so I now am off that med.
I think I really need tolook into the new splint thing Cmy Sue was speaking about, I just am lost in where to go?
Good luck with pursuing your degree, I really hope that, that works out, I know just how hard it is. I am in highschool, and I go to college part time. It is really hard, but i am so afraid losing all my dreams, and aspirations to letting the tmj overcome me. So I just deal with my pain in the best manner that i can, and force myself to go on... Those closest to me say that someday I will wear myself down, but This tmj, I believe in essence has made me a stronger person who had to grow up much faster... I really do wish you the best of luck...
Cally22.
thank you so much. Your supportive words are so helpful. Sometimes its hard to get through a day, and when I see that there are others dealing with this problem, and they are so caring, and they try to help others, it just does my heart good.
I actually tried the lidoderm patch before, ( with pain management), unfortunately it wasn't all that helpful. ( it helped some in the beginning, but that little relief didn't last long..) I also have seen a neurologist, for carpal tunnel, tmj, and headaches. He prescribed topamax, and more pain meds. And I recently had a bad experience with the topamax so I now am off that med.
I think I really need tolook into the new splint thing Cmy Sue was speaking about, I just am lost in where to go?
Good luck with pursuing your degree, I really hope that, that works out, I know just how hard it is. I am in highschool, and I go to college part time. It is really hard, but i am so afraid losing all my dreams, and aspirations to letting the tmj overcome me. So I just deal with my pain in the best manner that i can, and force myself to go on... Those closest to me say that someday I will wear myself down, but This tmj, I believe in essence has made me a stronger person who had to grow up much faster... I really do wish you the best of luck...
Cally22.