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Old 01-02-2004, 11:35 AM   #1
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deefl800 HB User
What type of Dr. do YOU see for your TMJ?

I have been to:
1 Regualar MD.
3 Regular dentists that claimed it was their "specialty"
2 Orthodontists that claimed same as above.

Still in pain most likely always will be

Thinking about seeing a pain management MD. anyone here go that route? How willing are they to help with TMJ?

THanks
Dee

 
Old 01-02-2004, 12:14 PM   #2
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saaraah HB User
Re: What type of Dr. do YOU see for your TMJ?

i have been to multiple health professionals [over 20 in total] including: oral pathologist, dentists, oral surgeons, neurologists, medical doctors [GP], massage therapists, physical therapists, osteopaths, etc.

it's difficult to find someone who can treat you well - ive ended up seeing another dentist. his treatment plan has been working for me, but it's taken me years and years and years to find him.

ive been to a pain clinic and pain management, and i found the health professionals to be useless. the neurologist and oral pathologist i saw had different ideas of what was wrong with me -- both of their ideas were wrong, which i knew, but they wouldnt listen to me, the uneducated 19 year old chick. ;) all that happened at the pain clinic was that i was prescribed lotsa drugs. baaad drugs.. never use divalproex.

anyway, perhaps other people have had better experiences with pain clinics, but i certainly found it to be useless -- they didnt even attempt to find out what the true problem was. instead, they drugged me up.

- saaraah.

 
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Old 01-02-2004, 12:21 PM   #3
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Re: What type of Dr. do YOU see for your TMJ?

It is important to see your regular MD and any other specialist he refers you to to rule out anything other than TMJ. If TMJ is the logical diagnosis, then a dentist who has taken a lot of extra courses in TMJ treatment and treats a lot of TMJ patients is who you should see. Unfortunately, all dentists who profess to be TMJ specialists are not equal. Most of us have seen several "specialists" before we find one that can help us. A good TMJ specialist also works in partnership with a physical therapist who is trained to treat TMJ disorders. Good luck in your search. It is a difficult one, but there are specialists out there who can help and it is not necessary to be resigned to a life of pain.

 
Old 01-02-2004, 08:02 PM   #4
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Re: What type of Dr. do YOU see for your TMJ?

I haven't had much success yet with dentist or doctors. I think part of my problem is that I live in such a small city. I initially saw a general dentist for TMJ. He treated me for a couple of years with good results with an upper splint. In 2003 I got worse and couldn't eat, so he referred me to a OS a couple hours way. I had arthroplasty on both sides after an MRI. I did okay with one side but the other is worse than before surgery. I am not sure why. No one can seem to give me an answer. I am now seeing an orthodontist to fix my bite. He can't seem to get me straightened out. I am also seeing a neurologist. He is trying me on different medications that seem to help some, but no major relief. He sent me to a physical therapist but that seemed to make everything worse. I quit after two sessions. I have also seen a medical doctor with no help. Pain management is my next option so if it helps let me know.

I think TMJ is bad to treat. For example, if you had cancer you could go to the world reknown treatment center in Houston, TX or possibly Mayo Clinic in Rochester. There doesn't seem to be any place to go for standardized treatment. There seems to be no research or standard treatment. I find most doctors or dentist just stare at me when I tell them my story and then say stuff like "I hope you have a good Christmas." I guess after two years in pain and $20,000 in treatment maybe I am getting a bit bitter.

 
Old 01-03-2004, 02:18 AM   #5
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Re: What type of Dr. do YOU see for your TMJ?

I see a functional jaw orthodontist that also has a tmj clinic. I wear a lower splint 24/7 that is adjusted at least every two weeks. His assistant (that has been working with tmj patients for over 17 years) calls to check on me in between and reports my progress to the doctor. He then calls me if he feels I need to come in sooner than my scheduled appointment. If I need to come in more often, they get me in with no problem. My doctor has a very busy practice, but, if you have an emergency or are in really bad pain, they will do everything to fit you in that day. It is so important to work with a doctor that is available when you have an emergency come up.

He also encourages me to e-mail him with questions or new symptoms and responds within a day. My doctor also has a lab on site that makes the splints right there, so I never have to wait for a splint if one breaks or needs to be changed. He recommends proper nutrition and supplements.

There is also a Physical Therapist that is well trained in tmj that he sends his patients to. Both she and the doctor have done a great job in working with my muscles and getting the spasms under control. My doctor said that between proper splint therapy and a well trained PT that has extensive training in tmj treatment, many discs can be recaptured. Just like tmj specialists, not all PT's are equal I did have 2 sessions of trigger point injections that helped and I hope will probably not have to be repeated because of the splint/PT treatment.

I have gone from a 10 to a 2 as far as pain most days. Sometimes I have a flare-up, but, that is usually controlled and is to be expected since I am still in splint therapy and its only been 2 months. My range of motion went from a 44/46 to a 55 opening. We are still working on the side motion which is 8mm/right, 10mm/left, but, he thinks will improve as treatment progresses.

Once the muscles are under control and my neck and shoulder muscles are loosened up, and I am out of pain, my doctor will be working on joint noises (my displaced discs) and function. I do have some extra joint noises that make me worry, but, it is too early in splint therapy to expect everything to be stabablized yet. They may build me up or reposition me at the next appointment. That's the thing with splint therapy, the adjustments are made as the joints and muscles change, which is why it is so important to get the adjustments.

Splint therapy is a process that takes time. It may take up to a year before I am stabalized, and then my doctor wants me pain free for at least 4 months before we even talk about phase II. Sometimes there is even a temporal shift where the bone grows and the space is made smaller, so, the splint has to be adjusted again. They discover this by doing tomograms as you go through treatment. Many times, after months of splint therapy, patients start to have symptoms, like headaches, again. They might have had a temporal shift, and a well trained tmj specialist will understand what that is and how to treat it.

My doctor said it takes patience and courage, so, I am trying to have both. I too went to many, many specialists and spent thousands on treatments before finding this doctor. I truly believe that successful treatment depends primarily on the skill of the doctor.

If someone is to travel outside of their area, make sure it is to a very, very experienced specialist like, T.J. Spahl, Rondeau, or others that truly are tmj specialists and have the success cases to prove it. Sometimes these specialists have you come in for a consultation, and then refer you to someone closer to where you live and oversee/consult on your case. I find this concept very reassuring, because you get the opinion of someone that has done and seen it all, and then you also get to be treated closer to home. Also, make sure that you do not have to pay for everything up front, especially when you do not know if you will even make it through the entire phase I. Most of the specialists (even the famous ones) that I have checked on require a deposit, and then have some sort of monthly plan, etc. Personally, I feel this is much better for the patient in the event that they cannot go through with the treatment. We all have to protect ourselves (and our pocketbooks) when it comes to tmj treatment. My recent splint cost about $900, and I pay for x-rays or other treatment as needed. My doctor also bills my insurance plan. It took me a long time to find this doctor, but, I know that there are others like him out there...It just takes time to find the right one for your particular condition.

I truly hope all of us are treated properly in 2004.

take care!
Navy2004

Last edited by Navy2004; 01-03-2004 at 02:24 AM.

 
Old 01-03-2004, 11:44 AM   #6
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GenDen HB User
Re: What type of Dr. do YOU see for your TMJ?

Navy,
The kind of care you are receiving is the kind of care everyone with TMJ dysfunction should be able to access. I don't remember if you have ever said your geographical location. I suspect your specialist is in a larger metropolitan area. You have made remarkable progress in such a short period of time. My progress is slower because my TMJ specialist is new to treating TMJ dysfunction and is still learning, though he is grounded in excellent principles of functional jaw orthopedics and has had a lot of training. My case is a difficult one as well. He thanks me regularly for the opportunity to treat me because he has learned so much. The other problem is that because he is new to the area, he hasn't established a partnership with a physical therapist who understands how to treat TMJ dysfunction. He had me try out a PT he thought might be good, but it didn't work out. I finally found an excellent PT. My TMJ specialist is very impressed with him and plans to work with him in the future. It has taken me six years to find a qualified TMJ specialist and a qualified PT. I believe that they are the only qualified people in my area. It has been a five year search. It takes a long time to find someone qualified. I am very fortunate to have avoided surgery in the process because it seems that when they don't know what to do with you, they send you for surgery. Some surgeries turn out well, but many do not. I am at a point now where I know I am going to be painfree and able to lead a normal life. 2004 is going to be my year. I wish the same for you, Navy, and everyone else who accesses this board.

 
Old 01-03-2004, 01:02 PM   #7
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Navy2004 HB User
Re: What type of Dr. do YOU see for your TMJ?

Hi GenDen,

It has taken me over 2 years to find a doctor like my TMJ specialist. I don't necessarily consider myself living in a large metropolitan area. I am in Georgia and I live in a residential area. Right now, I want to be put in a different position, because there is a position that I feel I can be in without displacing the disc when I open and close. I'm scheduled for a build-up and hopefully will be moved further forward. I have to admit as much as I'm pleased with my specialist...I wish i was extremely wealthy and could afford to go out of state regularly and see one of the top specialists like Spahl or Rondeau, if nothing else but for a second opinion, but, I know that is not realistic or logical. My case has been pretty complex, and has been a process. We haven't even gotten to the joint problems yet...just getting the muscles not to fire off has been a journey. I'm not satisfied with my splint as far as repostioning the joint...but, my doctor says we have to take baby steps and we will get there. I don't want surgery and from what I understand, it can be avoided for displaced discs if they get the joint and bite stabalized. The one concern I have is the phase II, because a dentist not involved with my case would have to be involved. My doctor just does the functional jaw orthodontics, but, he has several dentists that he works with and I am putting my trust in him. You know GenDen, I get mad at myself sometimes, because I find it so hard to trust and I am always questioning and worryng about my treatment. Once you've been through so much poor treatment, it is so hard to believe that something may work. Right now I still have the popping and clicking joint, but, I'm curious to see what my tmj doctor will be doing next. I still have a long road ahead of me, but, I hope 2004 is the year for many of us on the board. GenDen, thank-you for all your help and advice...you have been a blessing for me.

Navy2004

 
Old 01-03-2004, 05:03 PM   #8
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Join Date: Jan 2003
Posts: 1,219
TiffanyAnn HB User
Re: What type of Dr. do YOU see for your TMJ?

Quote:
Originally Posted by Navy2004
I see a functional jaw orthodontist that also has a tmj clinic. I wear a lower splint 24/7 that is adjusted at least every two weeks. His assistant (that has been working with tmj patients for over 17 years) calls to check on me in between and reports my progress to the doctor. He then calls me if he feels I need to come in sooner than my scheduled appointment. If I need to come in more often, they get me in with no problem. My doctor has a very busy practice, but, if you have an emergency or are in really bad pain, they will do everything to fit you in that day. It is so important to work with a doctor that is available when you have an emergency come up.

He also encourages me to e-mail him with questions or new symptoms and responds within a day. My doctor also has a lab on site that makes the splints right there, so I never have to wait for a splint if one breaks or needs to be changed. He recommends proper nutrition and supplements.

There is also a Physical Therapist that is well trained in tmj that he sends his patients to. Both she and the doctor have done a great job in working with my muscles and getting the spasms under control. My doctor said that between proper splint therapy and a well trained PT that has extensive training in tmj treatment, many discs can be recaptured. Just like tmj specialists, not all PT's are equal I did have 2 sessions of trigger point injections that helped and I hope will probably not have to be repeated because of the splint/PT treatment.

I have gone from a 10 to a 2 as far as pain most days. Sometimes I have a flare-up, but, that is usually controlled and is to be expected since I am still in splint therapy and its only been 2 months. My range of motion went from a 44/46 to a 55 opening. We are still working on the side motion which is 8mm/right, 10mm/left, but, he thinks will improve as treatment progresses.

Once the muscles are under control and my neck and shoulder muscles are loosened up, and I am out of pain, my doctor will be working on joint noises (my displaced discs) and function. I do have some extra joint noises that make me worry, but, it is too early in splint therapy to expect everything to be stabablized yet. They may build me up or reposition me at the next appointment. That's the thing with splint therapy, the adjustments are made as the joints and muscles change, which is why it is so important to get the adjustments.

Splint therapy is a process that takes time. It may take up to a year before I am stabalized, and then my doctor wants me pain free for at least 4 months before we even talk about phase II. Sometimes there is even a temporal shift where the bone grows and the space is made smaller, so, the splint has to be adjusted again. They discover this by doing tomograms as you go through treatment. Many times, after months of splint therapy, patients start to have symptoms, like headaches, again. They might have had a temporal shift, and a well trained tmj specialist will understand what that is and how to treat it.

My doctor said it takes patience and courage, so, I am trying to have both. I too went to many, many specialists and spent thousands on treatments before finding this doctor. I truly believe that successful treatment depends primarily on the skill of the doctor.

If someone is to travel outside of their area, make sure it is to a very, very experienced specialist like, T.J. Spahl, Rondeau, or others that truly are tmj specialists and have the success cases to prove it. Sometimes these specialists have you come in for a consultation, and then refer you to someone closer to where you live and oversee/consult on your case. I find this concept very reassuring, because you get the opinion of someone that has done and seen it all, and then you also get to be treated closer to home. Also, make sure that you do not have to pay for everything up front, especially when you do not know if you will even make it through the entire phase I. Most of the specialists (even the famous ones) that I have checked on require a deposit, and then have some sort of monthly plan, etc. Personally, I feel this is much better for the patient in the event that they cannot go through with the treatment. We all have to protect ourselves (and our pocketbooks) when it comes to tmj treatment. My recent splint cost about $900, and I pay for x-rays or other treatment as needed. My doctor also bills my insurance plan. It took me a long time to find this doctor, but, I know that there are others like him out there...It just takes time to find the right one for your particular condition.

I truly hope all of us are treated properly in 2004.

take care!
Navy2004
Hi Navy:
I was just curious, who do you see for treatment?
Thanks,
Tiffany

 
Old 01-03-2004, 08:16 PM   #9
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Michelle W HB User
Re: What type of Dr. do YOU see for your TMJ?

Navy could I ask where you are located at? I am wondering if you are located anywhere near my location?

Thanks,
Michelle

 
Old 01-03-2004, 10:56 PM   #10
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Navy2004 HB User
Re: What type of Dr. do YOU see for your TMJ?

Hi TiffanyAnne and Michelle,

I live in Georgia, in a residential area in Cobb County, My doctor is about a 30 minute drive from me, I prefer not to post his name on the boards, without his approval. I think that there are probably good doctors in every state, it just takes some time to find one that helps your particular tmj condition. In the meantime, I think it's great that this board gives us so much information. We need to be aware of the tmj doctors that are just in it for the money and don't know what to do when things don't go the way the text book training, or the class they took, tells them it should. Each person is an individual and heals differently.

God Bless!

Navy2004

 
Old 01-03-2004, 11:11 PM   #11
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CherylLynn24 HB UserCherylLynn24 HB UserCherylLynn24 HB User
Re: What type of Dr. do YOU see for your TMJ?

Hi Navy,

Aren't you seeing Dr. Dierkes out of Roswell?
Cheryl

 
Old 01-04-2004, 12:41 AM   #12
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Navy2004 HB User
Re: What type of Dr. do YOU see for your TMJ?

Thanks Cheryl

I wasn't going to post his name unless I cleared it with him first. Some doctors don't like that too much. But, yes a while back I posted about seeing him, so, it's been on the board before. That's who I see.

I see from your posts that you are taking Mike out of state to another doctor. Who are you going to see?

I hope you are getting over your cold and are able to travel.

take care!
Navy2004

 
Old 01-04-2004, 12:45 AM   #13
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CherylLynn24 HB UserCherylLynn24 HB UserCherylLynn24 HB User
Re: What type of Dr. do YOU see for your TMJ?

Sorry Navy,

Since you posted it here before, I didn't think that it was a secret. Goodness, news travels fast....how did you know that I was sick?
Cheryl

 
Old 01-04-2004, 12:57 AM   #14
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Navy2004 HB User
Re: What type of Dr. do YOU see for your TMJ?

Hi Cheryl,

I saw a post or two about you being sick somewhere. I hope you are getting better.

We've had the yuckies in our family for about a month. Strepp, virus, flu, mono, ..it's been a rough few weeks. I no sooner get one person back to school or work and then I'm at the doctor with another. We've had the warmest winter in years, so, you would think people would be well.

That's ok about posting the doctors name, I just don't like blasting his name all over the net without his permission. Now if there was someone on the boards from my area that really needed to find some proper care, I would direct them to him for at least a consultation. I now have several friends who have taken their children to him for functional orthodontics when conventional orthodontics did not work out well for them.

So, where are you taking Mike? I'm always interested in competent specialists that can help people. I'm keeping my fingers and toes crossed for you that this is the treatment that will cure Mike. He's much to young to be dealing with this mess. I've always said that you are one terrific mother. I'm sure you will find help for your son this year!

Take care!
Navy2004

Last edited by Navy2004; 01-04-2004 at 12:58 AM.

 
Old 01-04-2004, 01:10 AM   #15
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CherylLynn24 HB UserCherylLynn24 HB UserCherylLynn24 HB User
Re: What type of Dr. do YOU see for your TMJ?

Navy,

Thanks for the warm thoughts. I'm taking him to a Functional Jaw Orthodontist next week. I'm hoping for the best. I don't want to jinx myself, so I'll let everyone know how things went when we get back!

I'm feeling better, I hope that your family is, too. I hope that your treatment is going well. I hope that 2004 is a good pain-free year for everyone.
Cheryl

 
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