Long term TMJD Sufferer!

08-28-2009, 08:26 AM

Question for all of you that understand what it feels like all the PAIN and suffering TMJD has taken control of my life.
Let me sum up my story....I've suffered with this condition for 26 years, why so long? When I was growing up NO dr could help b/c they didn't know what was wrong...my first symptom? While yawning (we all know how PAINFUL that is) LOCKED open!!! My mom took me straight to the dr and he advised mom to give me tylenol and wait until it got better. I have suffered from Migranes since I was 10, that I can remember, earaches and jaw popping constantly.
I have had 2 jaw surgeries and have had my treatments done @ Emory in Atlanta, GA with Dr. Stephen Roser. He's been great in the 5 years I've been treated by him. With 2 failed surgeries which include: joint cleaning and replaced (surgery took 5 1/2hrs b/c my joints were found infront of my cheeks: did feel relief for over a year!) years later had another surgery to REMOVE jaw joints and replaced with fat. Had braces on for 3 1/2yrs and recently removed and now use retainers which cause lots of pain and swelling.
I'm currently on Percocet for pain & Soma as a muscle relaxer. I must say I have always expressed concern to my doctor that all these pain killers will do more harm than good, all I hear and see on the news is bad things on side effects, in which at the time I was on Vicodin and Soma. Therefore Dr changed me to Percocet.

My TRUE question is: dr has given me a precrip for "Methadone" and with the things I've read its not a good thing for pain. He also gave me precrip for Percocet.

Does anyone know what I'm talking about and do you have any feedback from personally taken Methadone?????
I don't want to take it!

*Wondering if Dr is giving up and has no other treatment. He is waiting for me to give him the green light on my 3rd jaw surgery "Prosthetic Jaw".

Thanks for reading my story and for your time!
TexasMom

08-28-2009, 12:14 PM

Quote:

Originally Posted by texasmom2

Question for all of you that understand what it feels like all the PAIN and suffering TMJD has taken control of my life.
Let me sum up my story....I've suffered with this condition for 26 years, why so long? When I was growing up NO dr could help b/c they didn't know what was wrong...my first symptom? While yawning (we all know how PAINFUL that is) LOCKED open!!! My mom took me straight to the dr and he advised mom to give me tylenol and wait until it got better. I have suffered from Migranes since I was 10, that I can remember, earaches and jaw popping constantly.
I have had 2 jaw surgeries and have had my treatments done @ Emory in Atlanta, GA with Dr. Stephen Roser. He's been great in the 5 years I've been treated by him. With 2 failed surgeries which include: joint cleaning and replaced (surgery took 5 1/2hrs b/c my joints were found infront of my cheeks: did feel relief for over a year!) years later had another surgery to REMOVE jaw joints and replaced with fat. Had braces on for 3 1/2yrs and recently removed and now use retainers which cause lots of pain and swelling.
I'm currently on Percocet for pain & Soma as a muscle relaxer. I must say I have always expressed concern to my doctor that all these pain killers will do more harm than good, all I hear and see on the news is bad things on side effects, in which at the time I was on Vicodin and Soma. Therefore Dr changed me to Percocet.

My TRUE question is: dr has given me a precrip for "Methadone" and with the things I've read its not a good thing for pain. He also gave me precrip for Percocet.

Does anyone know what I'm talking about and do you have any feedback from personally taken Methadone?????
I don't want to take it!

*Wondering if Dr is giving up and has no other treatment. He is waiting for me to give him the green light on my 3rd jaw surgery "Prosthetic Jaw".

Thanks for reading my story and for your time!
TexasMom

HI--glad to see you made it. I forgot to tell you that if you want to read old posts by a member that has had lots of surgeries, (from 2003 I believe) read Cymy Sue's old posts. She gives a lot of good info on her treatments and what had worked, and what she went through. click on search this board at the top of the tmj page, and click on old posts, then type her name in.
In my unprofessional opinion, I think if you find a new tmj specialist that is familiar with post op patients and knows what he is doing, you never will have to have anymore addtl' surgery. Hang in there, read lots of old posts, lots of good info on here.

J.

08-28-2009, 01:42 PM

I SOOO much appreciate you guiding me. It's nice for a change I'm usually the one doing all the guiding and its nice for a stranger to keep me under their wing!
Thank you thank you thank you!!!
I would like to keep in touch with you, maybe we can become friends, since we do have a little something in common, PAIN!

I will go and search for the person you suggested.

Lots of luck and my prayers go out to you and everything your going through as well.

FYI: My doctor is a Harvard graduate and has lots of experience but I think I'm that ONE patient he can't fix and maybe be feeling like he's at the end. I feel bad b/c I've got nothing but good things to say about him and would so recommend anyone to him b/c he is a great doctor with tons of experience.
To tell you the truth I'm seriously considering this 'prosthetic jaw' surgery b/c medications can only do so much and frankly he's just keeping me comfortable pain wise until I'm mentally ready and my family as well. The bad side, I don't like the O.R. and never did, and I'm going back to school to get my degree and a big surgery like that will only hinder my thinking and moral overall.

Sorry, I can go on and on.
Please keep in touch and tell me about yourself, I would like to compare notes and see where you are and what you've had done as well.
You too may ask me what you want and I will be glad to share my experiences with meds and surgeries.

Take care!
Tonie

08-28-2009, 03:47 PM

Quote:

Originally Posted by texasmom2

I SOOO much appreciate you guiding me. It's nice for a change I'm usually the one doing all the guiding and its nice for a stranger to keep me under their wing!
Thank you thank you thank you!!!
I would like to keep in touch with you, maybe we can become friends, since we do have a little something in common, PAIN!

I will go and search for the person you suggested.

Lots of luck and my prayers go out to you and everything your going through as well.

FYI: My doctor is a Harvard graduate and has lots of experience but I think I'm that ONE patient he can't fix and maybe be feeling like he's at the end. I feel bad b/c I've got nothing but good things to say about him and would so recommend anyone to him b/c he is a great doctor with tons of experience.
To tell you the truth I'm seriously considering this 'prosthetic jaw' surgery b/c medications can only do so much and frankly he's just keeping me comfortable pain wise until I'm mentally ready and my family as well. The bad side, I don't like the O.R. and never did, and I'm going back to school to get my degree and a big surgery like that will only hinder my thinking and moral overall.

Sorry, I can go on and on.
Please keep in touch and tell me about yourself, I would like to compare notes and see where you are and what you've had done as well.
You too may ask me what you want and I will be glad to share my experiences with meds and surgeries.

Take care!
Tonie

HI--wanted to get back before I turned off my computer tonight....As far as what you've stated in your story, I really believe that if you can be referred to another doctor, you can be put into a splint for post op patients like cymy sue's that will eleviate (sp)? some or most of your pain. This is exactly what she has done. I don't know much about the prosthetic jaw surgery, only what I've heard on here mainly, that it a horrible recovery, and there's many complications...bad ones like facial paralysis, disfigurement, and pain that really never goes away. I really really urge you to research that one to death until you make your decision. I truly believe that if you are willing to travel to another specialist, that you will get your pain under control. I feel for you so, and I pray that all of us one day will be looking back on this horrible time in our lives and say we've made great friends, learned a lot, and fought like heck to get better. BTW--I know Csue's doc. is listed somewhere on her posts, I believe he was in AL. Not saying that you should see him, but it's always good to keep researching new docs. in the country and letting everyone know the good ones, and what has worked for the people who have gotten a lot better. You need to definitely find someone who has worked with post op. patients and successfully treated them to get them out of pain, or pretty close to that. Don't rush into surgery ...Ok, i've written another book..

Take care..please know that I'm with you.

08-29-2009, 12:43 PM

Quote:

Originally Posted by texasmom2

Question for all of you that understand what it feels like all the PAIN and suffering TMJD has taken control of my life.
Let me sum up my story....I've suffered with this condition for 26 years, why so long? When I was growing up NO dr could help b/c they didn't know what was wrong...my first symptom? While yawning (we all know how PAINFUL that is) LOCKED open!!! My mom took me straight to the dr and he advised mom to give me tylenol and wait until it got better. I have suffered from Migranes since I was 10, that I can remember, earaches and jaw popping constantly.
I have had 2 jaw surgeries and have had my treatments done @ Emory in Atlanta, GA with Dr. Stephen Roser. He's been great in the 5 years I've been treated by him. With 2 failed surgeries which include: joint cleaning and replaced (surgery took 5 1/2hrs b/c my joints were found infront of my cheeks: did feel relief for over a year!) years later had another surgery to REMOVE jaw joints and replaced with fat. Had braces on for 3 1/2yrs and recently removed and now use retainers which cause lots of pain and swelling.
I'm currently on Percocet for pain & Soma as a muscle relaxer. I must say I have always expressed concern to my doctor that all these pain killers will do more harm than good, all I hear and see on the news is bad things on side effects, in which at the time I was on Vicodin and Soma. Therefore Dr changed me to Percocet.

My TRUE question is: dr has given me a precrip for "Methadone" and with the things I've read its not a good thing for pain. He also gave me precrip for Percocet.

Does anyone know what I'm talking about and do you have any feedback from personally taken Methadone?????
I don't want to take it!

*Wondering if Dr is giving up and has no other treatment. He is waiting for me to give him the green light on my 3rd jaw surgery "Prosthetic Jaw".

Thanks for reading my story and for your time!
TexasMom

I live in Atlanta as well and I am going to a place that is literally saving my life. I don't know the rules on here but because this is such a hard thing to deal with we should certainly talk.

I go to a center here and wear a day time appliance and a night time one. Both have helped significantly. I also see a pain doctor who Rx'ed me methadone and percocet. I was hesitant about the methadone before but after taking it it is actually not as strong as percocet or any other long term pain reliever. Yes, it does have a stigma but I think it's effective and given in smaller doses addresses that we aren't addicts; it really is good for long term pain.

I really would recommend splint therapy. It seems like you are attacking the jaw and not the issue it's causing. Surgeries are scary and expensive and I can refer you to the people I have been seeing. They will do x-rays and show you exactly what they find. There is no "Uh...me not know" around there.

08-29-2009, 02:41 PM

Quote:

Originally Posted by velvetrance

I live in Atlanta as well and I am going to a place that is literally saving my life. I don't know the rules on here but because this is such a hard thing to deal with we should certainly talk.

I go to a center here and wear a day time appliance and a night time one. Both have helped significantly. I also see a pain doctor who Rx'ed me methadone and percocet. I was hesitant about the methadone before but after taking it it is actually not as strong as percocet or any other long term pain reliever. Yes, it does have a stigma but I think it's effective and given in smaller doses addresses that we aren't addicts; it really is good for long term pain.

I really would recommend splint therapy. It seems like you are attacking the jaw and not the issue it's causing. Surgeries are scary and expensive and I can refer you to the people I have been seeing. They will do x-rays and show you exactly what they find. There is no "Uh...me not know" around there.

Thanks for your concern and great information. I really wanted people that have been asked to take Methadone to give me their personal experience with it. Its a scarry thing to take.
Let's see where shall I begin; since I have been treated for the past 5 or more years by the same doc he certainly has done all he can within his reach. I've been in splint therapy for about 2 years or just shy of it. I've also had braces for 3 1/2yrs and now wear an all day all night retainer for both top and bottom.
The pain I've had to indure is more than I can say in words, there is NO way of me expressing my pain; but all of us with TMJD feel the same way or at least I think so.

I've also done physical therapy to not only treat my tmjd but my neck and shoulders and even arms, if you need his info he comes highly recommended and in the Buckhead area.
I can go on and on with all the treatments I've tried in order to get better or should I say healed for a lack of a better word.

Please tell me who you see I would like to certainly weigh my options and get a second opinion.

Thanks again,
TexasMom

08-30-2009, 02:58 AM

I'd say Methadone is the safest really of all the long term pain medications because it's other method is to treat people with addiction. it's easier to quit taking.

Your neck, shoulders, posture, everything has something to do with it. I'm going to a place in Alpharetta and seeing a pain doctor in Decatur. Combined those two help A LOT.

From what it sounds like they arent explaining to you muscles and their spasms giving you pain; they all make it sound like joints.

Get a second opinion. Best of luck.

08-30-2009, 01:39 PM

Ok, well in that case it's Dr. Maggan for TMJ and Dr. Spektor for pain mgmt. I cannot drive because of the severity of vertigo.

-A

09-02-2009, 01:45 PM

Hi,

It certainly sounds like you've been through the mill with your jaw and because I've had so very little treatment so far for my own tmjd I don't feel qualified to really advise you. I do however know a bit about Methadone, in that it's purpose is largely used for those with a heroin addiction and methadone is prescribed as a long term substitute as it eases the withdrawal symptoms from heroin addiction. Your reasons for having being prescribed methadone are obviously different therefore you may not need to take it 'long term'. I have witnessed people who take methadone and the side effects aren't any worse than most other medications prescribed for tmj cases. I can understand your conern though and I think as long as you raise these with your Dr, he or she has to be sensitive of your needs and your opinion of how you would like to be treated medically in terms of what medication you would or would rather not take, especially on a long term basis.

Hope I may have been of some use in my reply

09-04-2009, 01:03 PM

Quote:

Originally Posted by texasmom2

Thanks for your concern and great information. I really wanted people that have been asked to take Methadone to give me their personal experience with it. Its a scarry thing to take.
Let's see where shall I begin; since I have been treated for the past 5 or more years by the same doc he certainly has done all he can within his reach. I've been in splint therapy for about 2 years or just shy of it. I've also had braces for 3 1/2yrs and now wear an all day all night retainer for both top and bottom.
The pain I've had to indure is more than I can say in words, there is NO way of me expressing my pain; but all of us with TMJD feel the same way or at least I think so.

I've also done physical therapy to not only treat my tmjd but my neck and shoulders and even arms, if you need his info he comes highly recommended and in the Buckhead area.
I can go on and on with all the treatments I've tried in order to get better or should I say healed for a lack of a better word.

Please tell me who you see I would like to certainly weigh my options and get a second opinion.

Thanks again,
TexasMom

HI texasma--Just checking and seeing how you have been, and if you've made any decisions as to your treatment? I hope you are doing ok....Take care....J.

09-05-2009, 07:21 AM

Thank you for checking in, I have not made any decisions other than NOT taking Methadone that's for sure. I've been sick with the bug going around, high fever, cough and body aches.
I am looking into searching for another Maxillofacial dr for a second opinion but have not made a decision. I have to do alot of research on the dr's before I decide to call for an appointment.

How are things with you? How's the pain level and swelling?

09-05-2009, 07:27 AM

Many doctors will only offer drugs & surgery. While these may offer relief they can also have side-effects which have negative effects. I would suggest you look into medical massage therapy or Craniosacral & Myofascial therapies as these are often extremely helpful for people suffering from the condition you've experienced.

Long term TMJD Sufferer!

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