Cymy Sue
08-23-2003, 09:07 AM
Cheryl,
Thank you for your remarks.
As always, you are so kind to everyone.
You bring up a subject (asset) that some of us "Older Vets" have questioned. We do wonder sometimes if our very long term experiences, good or bad, are beneficial and if it really helps anyone to read them.
I base this on a very brief remark "Marlene" made a while back. She has been (The Resident Success) for quite a while, and she said she wasn't sure if she would continue to post her experiences, she wasn't sure it was helping anyone.
"Elaine" mentioned that sometimes she feels like she just "repeats" her story of the ravages of surgery and the damage implants can cause and if anyone is interested or helped.
Both of these women have so much experience and have seen many aspects of TMJD and treatments that many of us have not. I include myself in this, because Marlene's posts about Splint Therapy is the reason I ask if a splint could help me. I had been totally convinced a splint could not help someone in my condition. Also, I did not make the mistake of getting implants.
There are others, such as Donna (Luigi) who has experienced the most devastating consequences of surgeries that were done. She doesn't post very much, but she does have a story that needs to be told.
Sharri, (Sharbear) is not doing very well right now. She had a reconstructing surgery that seemed to be working for a while, but she's having problems again and says she does want to post this experience, but does not feel well enough right now.
I've read most all of the old posts and the archives. Many people have come and gone over the last few years. I wonder if they got well. Did their treatments or surgeries work? Or did they get worse and don't feel like posting anymore.
I, like so many others, got involved in the surgeries that were being done in the 80's and 90's and have experienced a little bit of everything except implants (and almost did that). I also was in orthodontics, on & off about 8 or 9 years, and tried every kind of splint that could be made. I've tried nearly every alternative treatment available.
I sometimes think that maybe we should not post these experiences and then someone else will ask about the results of surgical procedures. I know there have been, what many consider to be successes and they would most likely not come to a forum such as this.
I do keep up with the statistics and what the experts and researchers are saying and TMJD surgery is still very controversial and as far as curing all the problems, it does not. There is not one surgery available that will cure TMJD and make you the way you were before. It can help, sometimes.
When I found this board last Oct., I thought there would be information about new surgeries and techniques that might not be available in my area. I had just seen my last surgeon and discussed all types of arthrocopic & arthroplastic procedures. They were still the same as 5 & 10 years prior and he said I couldn't have anymore. Any Arthro procedure would only worsen my condition. I was under the impression you could have these forever. I talked to his associate who does implants and prosthesis. Same story, they had learned that after multiple surgeries, the possibility of an implant or prosthesis working very well or at all, was 0. These are not run of the mill Surgeons. They do not have elaborate web-sites or advertise, but their names are all over the net, as they are well known for their expertise and are involved in ongoing research in finding better alternatives than what they have now. They both told me there was just not anything available that could produce satisfactory long term relief.
I could have found a Surgeon that would have done something, possibly implants or total prosthesis....But what a mistake that would have been.
TMJD can be devastating on it's on, as so many well know.
Add the ravages and damaging aspects of surgery to this and try to imagine........
Those of us who have experienced failures are not trying to tell anyone not to have surgery. We are relating true experiences and saying be very careful with your decision, it will affect the rest of your life.
Some of us have long term experience with alternative treatments, such as chiro, accupuncture, PT, MT, and the list goes on.
Many times, I don't look at the board for a few days and I think it may be time to move on. I've told my story, got help and I have nothing else to offer.
Then I see a post such as nonny-mouse and I feel I need to say, don't give up. There are others with this and it can be helped.
He or she had seen many discussion boards where the general trend is that there is no cure, no successful treatment and everyone has to learn to live with it. How terrible for these people not to discuss treatments and therapies that will help and many times work very well.
I have learned much from this board and the questions asked, have lead me to research many things that I otherwise would not have thought of.
I have learned that Splint Therapy is probably the best treatment available, although it may not help everyone.
I have learned for Splint Therapy to work, the actual cause of the TMJD has to be addressed. I think sometimes this is the reason it fails. Also, the design of the splint is all important, as so many cause additional problems.
I have learned there are many reasons for TMJ dysfunction and getting an accurate diagnosis is not easy nor is finding a competent Care Provider.
I've learned there are very few Providers who truly understand the TM joint and how to treat all that is involved.
There has been much discussion lately regarding different schools of thought and different theories on treatment.
There is only one theory that works. Diagnose the problem correctly. Design the appropriate appliance, if one is needed and add alternative treatments if they help. This theory however, seems very illusive, regardless of where the Care provider got his or her training.
Anyone can put "TMJ Specialist" on their shingle.
There is as much misinformation and confusion about TMJD as there was 25 years ago and I assume we will be learning about it for years to come as well as our Care Providers.
Anyway, Thanks again, Cheryl. Asset is a much nicer word than relic.
Cymy Sue
[This message has been edited by Cymy Sue (edited 08-25-2003).]
Thank you for your remarks.
As always, you are so kind to everyone.
You bring up a subject (asset) that some of us "Older Vets" have questioned. We do wonder sometimes if our very long term experiences, good or bad, are beneficial and if it really helps anyone to read them.
I base this on a very brief remark "Marlene" made a while back. She has been (The Resident Success) for quite a while, and she said she wasn't sure if she would continue to post her experiences, she wasn't sure it was helping anyone.
"Elaine" mentioned that sometimes she feels like she just "repeats" her story of the ravages of surgery and the damage implants can cause and if anyone is interested or helped.
Both of these women have so much experience and have seen many aspects of TMJD and treatments that many of us have not. I include myself in this, because Marlene's posts about Splint Therapy is the reason I ask if a splint could help me. I had been totally convinced a splint could not help someone in my condition. Also, I did not make the mistake of getting implants.
There are others, such as Donna (Luigi) who has experienced the most devastating consequences of surgeries that were done. She doesn't post very much, but she does have a story that needs to be told.
Sharri, (Sharbear) is not doing very well right now. She had a reconstructing surgery that seemed to be working for a while, but she's having problems again and says she does want to post this experience, but does not feel well enough right now.
I've read most all of the old posts and the archives. Many people have come and gone over the last few years. I wonder if they got well. Did their treatments or surgeries work? Or did they get worse and don't feel like posting anymore.
I, like so many others, got involved in the surgeries that were being done in the 80's and 90's and have experienced a little bit of everything except implants (and almost did that). I also was in orthodontics, on & off about 8 or 9 years, and tried every kind of splint that could be made. I've tried nearly every alternative treatment available.
I sometimes think that maybe we should not post these experiences and then someone else will ask about the results of surgical procedures. I know there have been, what many consider to be successes and they would most likely not come to a forum such as this.
I do keep up with the statistics and what the experts and researchers are saying and TMJD surgery is still very controversial and as far as curing all the problems, it does not. There is not one surgery available that will cure TMJD and make you the way you were before. It can help, sometimes.
When I found this board last Oct., I thought there would be information about new surgeries and techniques that might not be available in my area. I had just seen my last surgeon and discussed all types of arthrocopic & arthroplastic procedures. They were still the same as 5 & 10 years prior and he said I couldn't have anymore. Any Arthro procedure would only worsen my condition. I was under the impression you could have these forever. I talked to his associate who does implants and prosthesis. Same story, they had learned that after multiple surgeries, the possibility of an implant or prosthesis working very well or at all, was 0. These are not run of the mill Surgeons. They do not have elaborate web-sites or advertise, but their names are all over the net, as they are well known for their expertise and are involved in ongoing research in finding better alternatives than what they have now. They both told me there was just not anything available that could produce satisfactory long term relief.
I could have found a Surgeon that would have done something, possibly implants or total prosthesis....But what a mistake that would have been.
TMJD can be devastating on it's on, as so many well know.
Add the ravages and damaging aspects of surgery to this and try to imagine........
Those of us who have experienced failures are not trying to tell anyone not to have surgery. We are relating true experiences and saying be very careful with your decision, it will affect the rest of your life.
Some of us have long term experience with alternative treatments, such as chiro, accupuncture, PT, MT, and the list goes on.
Many times, I don't look at the board for a few days and I think it may be time to move on. I've told my story, got help and I have nothing else to offer.
Then I see a post such as nonny-mouse and I feel I need to say, don't give up. There are others with this and it can be helped.
He or she had seen many discussion boards where the general trend is that there is no cure, no successful treatment and everyone has to learn to live with it. How terrible for these people not to discuss treatments and therapies that will help and many times work very well.
I have learned much from this board and the questions asked, have lead me to research many things that I otherwise would not have thought of.
I have learned that Splint Therapy is probably the best treatment available, although it may not help everyone.
I have learned for Splint Therapy to work, the actual cause of the TMJD has to be addressed. I think sometimes this is the reason it fails. Also, the design of the splint is all important, as so many cause additional problems.
I have learned there are many reasons for TMJ dysfunction and getting an accurate diagnosis is not easy nor is finding a competent Care Provider.
I've learned there are very few Providers who truly understand the TM joint and how to treat all that is involved.
There has been much discussion lately regarding different schools of thought and different theories on treatment.
There is only one theory that works. Diagnose the problem correctly. Design the appropriate appliance, if one is needed and add alternative treatments if they help. This theory however, seems very illusive, regardless of where the Care provider got his or her training.
Anyone can put "TMJ Specialist" on their shingle.
There is as much misinformation and confusion about TMJD as there was 25 years ago and I assume we will be learning about it for years to come as well as our Care Providers.
Anyway, Thanks again, Cheryl. Asset is a much nicer word than relic.
Cymy Sue
[This message has been edited by Cymy Sue (edited 08-25-2003).]
Sponsor
CherylLynn24
08-24-2003, 04:27 AM
Delete post :)
Cymy Sue
08-24-2003, 05:37 AM
Thanks again Cheryl,
I had TMJD many years before surgeries. It's awful as so many well know. After every surgery, it got worse, if anyone can believe it.
Sometimes it does seem like we're stuck on repeat, but we rarely go a week that someone has not been convinced that surgery will absolutely work. The Surgeons never really know how a person is going to come out of these things and as I said, You will not be cured. There is no surgical cure for TMJD. You might have better function and less pain for a while, but you will still have problems.
I post my experiences, not to tell people "Don't have surgery", but to tell them you might come away worse.
I know there are some cases that it is absolutely necassary. I've been told by many Doc's and my Dentist, that my discectomy was unavoidable. BUT, I'll never know if my discs were always that bad or if the first 2 surgeries damaged them beyond repair. They were Bilateral Sagittal Splits. (Sounds like that was what they wanted to do to you)I'm glad you didn't do it.
Nobody here wants to be a know it all and keep a discussion going that causes problems, but with a couple of current posts, members have been told that a disc replacement surgery is new and has great success. It's not new and it has little potential for lasting any length of time. I can't believe that Doctors are still doing this when all of the Medical, Dental and OS Journals report terrible stats and failures on this particular procedure.( Not to mention the Surgeons who won't do it anymore )
I know a lot of people don't believe they can be in a worse condition, but you can.
I wish someone had told me 16 years ago, NO, don't do that, you'll be worse.
I also want to stress to those who haven't had good results with a splint, to keep looking.
I was in an incredible mess when my Dentist tried to figure out something that would help. It took a while and consults with other groups, but they came up with the right design.
It just seems like to me if they can figure out something that will work for someone with the damage I had, someone, somewhere could help most people. You just have to find them.
For those who have limited income, my Dentist does not use computers or other electronic devices to diagnose and design splints. There are some good Dentist out there who understand TMJD problems and their charges are affordable for most people.
There are many Dentist who continue their education on TMJD and Splint Design at different facilities other than the one we hear so much about. There are other options out there for us.
The "Splint" that has done away with nearly all of my TMJD problems and surgically induced symtoms, was $600.
It took 25 years to get to a point where I can say, something is working and I'm better. I have very few symtoms and almost no pain.
Not to speak ill of any treatment or any type of Specialist, but all it takes is a Dentist or Doctor who knows what they are doing, regardless of where they learned it.
Good luck to all in your search and take care,
Cymy Sue
(Cheryl, I may be through venting now, I'm not sure. Thanks again for listening)
I had TMJD many years before surgeries. It's awful as so many well know. After every surgery, it got worse, if anyone can believe it.
Sometimes it does seem like we're stuck on repeat, but we rarely go a week that someone has not been convinced that surgery will absolutely work. The Surgeons never really know how a person is going to come out of these things and as I said, You will not be cured. There is no surgical cure for TMJD. You might have better function and less pain for a while, but you will still have problems.
I post my experiences, not to tell people "Don't have surgery", but to tell them you might come away worse.
I know there are some cases that it is absolutely necassary. I've been told by many Doc's and my Dentist, that my discectomy was unavoidable. BUT, I'll never know if my discs were always that bad or if the first 2 surgeries damaged them beyond repair. They were Bilateral Sagittal Splits. (Sounds like that was what they wanted to do to you)I'm glad you didn't do it.
Nobody here wants to be a know it all and keep a discussion going that causes problems, but with a couple of current posts, members have been told that a disc replacement surgery is new and has great success. It's not new and it has little potential for lasting any length of time. I can't believe that Doctors are still doing this when all of the Medical, Dental and OS Journals report terrible stats and failures on this particular procedure.( Not to mention the Surgeons who won't do it anymore )
I know a lot of people don't believe they can be in a worse condition, but you can.
I wish someone had told me 16 years ago, NO, don't do that, you'll be worse.
I also want to stress to those who haven't had good results with a splint, to keep looking.
I was in an incredible mess when my Dentist tried to figure out something that would help. It took a while and consults with other groups, but they came up with the right design.
It just seems like to me if they can figure out something that will work for someone with the damage I had, someone, somewhere could help most people. You just have to find them.
For those who have limited income, my Dentist does not use computers or other electronic devices to diagnose and design splints. There are some good Dentist out there who understand TMJD problems and their charges are affordable for most people.
There are many Dentist who continue their education on TMJD and Splint Design at different facilities other than the one we hear so much about. There are other options out there for us.
The "Splint" that has done away with nearly all of my TMJD problems and surgically induced symtoms, was $600.
It took 25 years to get to a point where I can say, something is working and I'm better. I have very few symtoms and almost no pain.
Not to speak ill of any treatment or any type of Specialist, but all it takes is a Dentist or Doctor who knows what they are doing, regardless of where they learned it.
Good luck to all in your search and take care,
Cymy Sue
(Cheryl, I may be through venting now, I'm not sure. Thanks again for listening)
CherylLynn24
08-25-2003, 01:53 AM
Delete post
Cymy Sue
08-25-2003, 05:20 AM
You're absolutely right. Caring and experienced Providers come from many different areas of training.
With your post of the LVI Business Course, I was stunned that they were so open about reeling the people in and charging these astronomical prices.
I also read through their Clinical Courses and almost all have the reoccuring theme of convincing the patient, presenting the case and fees.
It's almost like, use the patients desperation to convince them that they absolutely need the treatment regardless of the charges.
I looked at several other facilities courses including Pankey and didn't see this aspect of treatment. Maybe they don't put it out there for the world to see.
I think you got a good one and the fees seem reasonably for Mike's treatment. But I agree, $6000 & $8000 for treatment...... How many people can afford that.
I believe the neuromuscular theories in treatment could help a lot of people. But how many people will be denied this, due to the fees.
I had immediate and incredible relief with my splint and it was $600. My dentist understands the neuromuscular aspects of treatment. I think a lot of providers do, they just don't add the title to their practice. I say this because most of us have neuro-muscular problems and couldn't be helped if this is not addressed.
I see so many people relatively new to the world of TMJD and they seem to think if they can't get to a Neuromuscular Specialist or afford this treatment, they don't have any alternatives.
Neuromuscular theories may be the "key" to treatment that works for many of us, but I do believe there are many different providers who have known this for quite a while and use these theories without "Cashing in on it", so to speak.
There are so many desperate & hurting people and no easy way to know how to find the "Right One" to help.
People running out of hope & money, because like you and others, they have already tried so many different Providers and come away with worse problems or nothing.
TMJD is such an awful disorder and the discouragement of finding someone who knows how to help seems overwhelming.
I feel so bad for those who sound like they are at the point of being hopeless and giving up.
I want to help, but don't know the answers. I think some of the members who advise to interview the Providers with tons of questions, have come upon the best ideas so far, but we need a better way to protect our health and get proper treatment.
Maybe some day, it will be a little easier. Hopefully there will be a true "TMJD Specialty", eventually, and we can go to these Doctors and feel confident that they know what they are doing.
If you would have ask me 10 years ago if I thought this would happen, I would have said absolutely. I saw the need a long time ago and did think that there would be a seperate Specialty for TMJD Treatment only, with Doctors trained specifically to treat this disorder and nothing else. Doctors trained in every aspect of the disorder, using all of the research and the experience of those who were the pioneers. Using a standard of treatment that has been proven to work, yet individualizing treatment for each patient.
Sadly, we are still going to Dentists, Ortho's, and others who do treat TMJD, but do it many times by going to week-end seminars. Very few study TMJD for years to develope an understanding and expertise to accurately and appropriately treat each persons individual case.
I don't believe we will see a lot of people truly helped or cured as long as TMJD Treatment is just integrated into other specailties. We need Doctors who have years of training and treat nothing else but TMJD and all the problems it causes.
I think we could keep them "stacked" with appointments.
I guess I'm done now, too.
Cymy Sue
[This message has been edited by Cymy Sue (edited 08-25-2003).]
With your post of the LVI Business Course, I was stunned that they were so open about reeling the people in and charging these astronomical prices.
I also read through their Clinical Courses and almost all have the reoccuring theme of convincing the patient, presenting the case and fees.
It's almost like, use the patients desperation to convince them that they absolutely need the treatment regardless of the charges.
I looked at several other facilities courses including Pankey and didn't see this aspect of treatment. Maybe they don't put it out there for the world to see.
I think you got a good one and the fees seem reasonably for Mike's treatment. But I agree, $6000 & $8000 for treatment...... How many people can afford that.
I believe the neuromuscular theories in treatment could help a lot of people. But how many people will be denied this, due to the fees.
I had immediate and incredible relief with my splint and it was $600. My dentist understands the neuromuscular aspects of treatment. I think a lot of providers do, they just don't add the title to their practice. I say this because most of us have neuro-muscular problems and couldn't be helped if this is not addressed.
I see so many people relatively new to the world of TMJD and they seem to think if they can't get to a Neuromuscular Specialist or afford this treatment, they don't have any alternatives.
Neuromuscular theories may be the "key" to treatment that works for many of us, but I do believe there are many different providers who have known this for quite a while and use these theories without "Cashing in on it", so to speak.
There are so many desperate & hurting people and no easy way to know how to find the "Right One" to help.
People running out of hope & money, because like you and others, they have already tried so many different Providers and come away with worse problems or nothing.
TMJD is such an awful disorder and the discouragement of finding someone who knows how to help seems overwhelming.
I feel so bad for those who sound like they are at the point of being hopeless and giving up.
I want to help, but don't know the answers. I think some of the members who advise to interview the Providers with tons of questions, have come upon the best ideas so far, but we need a better way to protect our health and get proper treatment.
Maybe some day, it will be a little easier. Hopefully there will be a true "TMJD Specialty", eventually, and we can go to these Doctors and feel confident that they know what they are doing.
If you would have ask me 10 years ago if I thought this would happen, I would have said absolutely. I saw the need a long time ago and did think that there would be a seperate Specialty for TMJD Treatment only, with Doctors trained specifically to treat this disorder and nothing else. Doctors trained in every aspect of the disorder, using all of the research and the experience of those who were the pioneers. Using a standard of treatment that has been proven to work, yet individualizing treatment for each patient.
Sadly, we are still going to Dentists, Ortho's, and others who do treat TMJD, but do it many times by going to week-end seminars. Very few study TMJD for years to develope an understanding and expertise to accurately and appropriately treat each persons individual case.
I don't believe we will see a lot of people truly helped or cured as long as TMJD Treatment is just integrated into other specailties. We need Doctors who have years of training and treat nothing else but TMJD and all the problems it causes.
I think we could keep them "stacked" with appointments.
I guess I'm done now, too.
Cymy Sue
[This message has been edited by Cymy Sue (edited 08-25-2003).]
Marlene
08-25-2003, 01:56 PM
I would just like to clarify that my dentist is a General Dentist whose practice is limited to the treatment of patients with orthodontic and TMJ problems. There is no "specialist" certification/designation with regards to TMJ in Canada.
I would also like to add that, in the "pursuit" of proper treatment for TMJ, one shouldn't "put all your eggs in one basket" so to speak, or follow the "latest craze" in treatment - whether it be dentistry or surgery, or the newest "quick fix". More often than not, TMJ treatment involves a multi-disciplinary approach utilizing complimentary therapies to achieve the best results.
Marlene :D
I would also like to add that, in the "pursuit" of proper treatment for TMJ, one shouldn't "put all your eggs in one basket" so to speak, or follow the "latest craze" in treatment - whether it be dentistry or surgery, or the newest "quick fix". More often than not, TMJ treatment involves a multi-disciplinary approach utilizing complimentary therapies to achieve the best results.
Marlene :D
CherylLynn24
08-25-2003, 02:33 PM
Oops! I'm sorry for the error, Marlene. Thanks for clearing that up. :) Did your orthodontist also do your splint therapy?
Cheryl
Cheryl
Cymy Sue
08-25-2003, 04:22 PM
Hi Marlene,
Glad to see you back. You have been missed. The information and experience you provide is badly needed. Your explanations are always precise and to the point.
Please keep posting how you were treated for TMJD with non-invasive methods, that it was done by a General Dentist with the expertise to treat TMJD and the positive results you experienced.
As you can see, I've taken to writing book length posts, due my dismay when reading the posts made by new members and their confusion regarding where and how to get appropriate treatment and how to afford it.
I know many have had bad experiences with Dentists, but I've had incredibly bad experiences with so-called TMJD Specialists and Surgeons.
I know that you and I can not be the only people in the world to be able to find a General Dentist experienced in treating TMJD with splint therapy (and in your case ortho and some alternative therapies), and come away with incredible results and our lives back.
I believe there are many out there, like ours. I wish someone would move the forrest, so they could be seen.
Cymy Sue
Glad to see you back. You have been missed. The information and experience you provide is badly needed. Your explanations are always precise and to the point.
Please keep posting how you were treated for TMJD with non-invasive methods, that it was done by a General Dentist with the expertise to treat TMJD and the positive results you experienced.
As you can see, I've taken to writing book length posts, due my dismay when reading the posts made by new members and their confusion regarding where and how to get appropriate treatment and how to afford it.
I know many have had bad experiences with Dentists, but I've had incredibly bad experiences with so-called TMJD Specialists and Surgeons.
I know that you and I can not be the only people in the world to be able to find a General Dentist experienced in treating TMJD with splint therapy (and in your case ortho and some alternative therapies), and come away with incredible results and our lives back.
I believe there are many out there, like ours. I wish someone would move the forrest, so they could be seen.
Cymy Sue