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Old 04-06-2004, 06:10 AM   #1
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Cymy Sue HB User
Hello singer1..My Old post

Hi singer1,

I decided to start a new thread due to the "old one" being so long. I'm sorry it's taken a couple of days to answer your question, my Mother's health is quite bad and her care is taking a lot of my time.

I'm glad you and others have found the post helpful. I made it about a month after I had started splint therapy (again) for the first time in 10 years.(Dec.02)

I was diagnosed with TMJ in 1977. I was 25 years old. Treatment at that time was based on treating occlusional problems. I wore splints and braces for about 10 years. MRI's Tomograms and other diagnostics were not available, so symtoms were the basis of diagnosis and treatment. My occlusion was not bad, but I had "the" symtoms, so I was treated.

I didn't get any better with this and in 1988 was told Orthognathic Surgery (breaking and re-structuring of bones to the correct the bite) was the answer and cure for TMJD. I had 2 surgeries that only made my condition worse. A few months later, MRI's were avalable and it was discovered that my joints were abnormal, my discs were shreds and these surgeries had caused more trauma and damage. Nerve, bone and muscle. I still have remnants of this damage, especially nerve damage.
In 1990, I had to have bone grafts due to infection after these surgeries.

In 1992, I had a discectomy with (ear) cartilage replacement discs. I was told then, never to use a splint again. It wouldn't help and might cause further problems. The replacement disc lasted about 2 years and started to deteriorate. In 1994, I was told they were not using cartilage of any kind any more and my only option was a discectomy without any type of replacement disc.
I managed until 1997, until the cartilage replacements were completely shredded as my original disc had and then had the discectomy. I was told again by the Surgical community that a splint could not possibly help and might do more harm. I was referred to "Pain Management", probably for the rest of my life, they said.

(you had ask about medication. I was never given anything longer than a couple of weeks with these surgeries. I took OTC Tylenol the rest of the time and suffered.
In 1997, 20 years after being diagnosed and 5-6 surgeries later, I was put in "Pain Management". With the damage I had at this time, I most likely could have had anything I wanted. I did not want to be medicated nor get dependent on meds. I stayed with a low dose of Tylenol 3, Baclofen for nerve pain and klonopin for muscle spasms and rigidity. I was on & off this combination for about 5 years. Due to another health problem, I could not take muscle relaxants, anti-inflammatories, or other meds that might have been more helpful)

In Jun. 2002, I decided I couldn't live on medication any longer or with the pain and symtoms I still suffered and ask for Implants or a Total Prothesis.
I was told due to age (50), multiple surgeries, not enough bone to attach anything to, muscle and nerve damage, I would not be considered a good candidate for either and turned down. I was told staying highly medicated the rest of my life was my only option.
In Sept.2002, I went back and ask again for help and was told the same thing.
I was also told again, Splint Therapy at this stage would be a waste of time and money.

My condition at this time was, basically, all symtoms anyone can have with TMJD, plus added damage from surgeries. I had basically no joint capsules, no discs, very little left of either condyle, numb from my nose down and my left condlye had been permanently displaced since the first surgery in 1988, surgically induced Trigeminal Neuralgia, and muscles in spasm from my head to my lower back for years. In 2000, I had developed an intolerable Tinnitus, nasal problems that required surgery and eye problems, all due to the Trigeminal Nerve damage. With the left condyle lower and basically no joint structure, the muscles had compensated and enlarged considerably. This caused the muscles on the right side to shorten and pull up and I had an awful, very visable, deviation. My opening had been 5-10-15 mm's during most of this time.
With Theraputic Massage for about 4 years pryor to 2002, I had gotten up to about 19 mm's and some of the muscle problems were relieved, mostly neck, back shoulders, etc. The muscles in my face seemed to have been in a mess too long to be helped very much. I highly recommend Massage Therapy for muscle problems. I was in good shape from my neck down by this time.

I had been completely brain washed about splint therapy and had no hope of this ever helping.

I found this forum in Oct. 2002, hoping to find information about new surgical techniques that might help, that were not available in my area. This was not the case. The surgeries to help TMJD had not progressed very much in over 20 years.
I did find a lot of discussion regarding Splint Therapy and people being helped. I found that Splint Therapy was not obsolete and realized I might have another option. I didn't have a lot of hope, I was called a multi-surgical mess, more times that I can remember as have many others here.

I had been seeing the same Dentist for about 25 years. He was aware of my condition and had kept up with my surgeries and problems.
I had not kept up with advances in Splint Therapy and had no idea that he had continued his education in TMJD and Splint Therpay and was treating people with splints with great success. Specifically, people with deteriorated joints and disc from diseases such as osteo and rheumatoid arthritis.

I've been asked "why" he had not suggested a splint for me during this time. He did ask if my Surgeon did not think a splint would help several times and I said 'NO". Technically and ethically, I had been under one Surgeons care for 10 years and I assume that was as far as my Dentist could go with any suggestions for treatment.

I had been talking to my Dentist through the summer months of 2002 and he had been been doing some "investigating" into "what" might help me.
I dumped my Surgeon in Oct. 2002, got a signed release from him and told my Dentist I wanted help. He's a regular DDS, but has an incredible knowledge and understanding of the joint and it's function. Also, of the muscle problems we have. His continued education on Splint Design and treating TMJD, is ongoing.

He had already consulted with some other Dentists and Groups around the country who were working with multi-surgicals and people with joints destroyed by disease.

In Dec 2002, I started Splint Therapy based on a theory from all of these people and my Dentist. Within a few days, the constant headache started to decrease. The muscles in my face immediately responded to the splint. Symtoms were going away very quickly. Within a few of months, my opening was increasing. The enlarged muscles on the left side were disappearing and with this, the muscles on the right side started to lengthen. My face started to staighten. As this was happening, more symtoms started to go away and I was having less pain every day. The Tinnitus started to ease. I think by about 3 months or so, my opeing had increased to 32-34 mm's.
I think by 6 months, I was virtually pain-free, looked like myself again and had mostly only symtoms left of the nerve damage that occured so many years ago. I most likely will not have any more increase in opening, without disc, but 34 mm's is great for me. I still have a little Tinnitus occasionally.

I will most likely need this type of splint support for a long time, maybe forever. This splint does not have a specific name, but is defined by what it was designed to do. It's called a Posterior Passive Muscle Repositional Splint.
It's design is to support my discless joints and let the muscles reposition back to as normal as possible for me.
It's design is very simple and specifically for my condition. It's a bottom fit with a flat plane for my top teeth to rest on. It has about 1 mm's of acrylic between my teeth. My Dentist and his colleagues believe in completely individualized treatment. Everyone needs and responds to something different.

I had thought a few months ago that everything that was going to get better, had. I have very few problems anymore. TMJD does not rule my life and has not for quite a while. I have virtually no pain. An occasional headache like normal people. I still had some problems from the surgical nerve damage.

A couple of months ago, I realized the feeling had come back into my upper lip, which has been numb for 16 years. In the past few weeks, I've had some minor feeling return in my lower face and the nerves are twitching in my bottom lip and chin. I believe I may realize some more improvement as time goes on.

With nerve damage, usually, if it hasn't gotten better in 2 years, "they" say there's no hope. Obviously, "they" are wrong.

I believe the muscles being in severe spasm for so many years had the nerves compressed and hindered them from regenerating or healing. With the splint relaxing the muscles and compression on the Trigeminals and auxillary nerves, after about a year, they have started to heal or regenerate. I have not talked to any Specialist about this almost unbelievable turn of events, but I did talk to my Internist and he is in agreement with my theory.
Needless to say, I've done quite a bit of research on nerve damage and regeneration, with the help of a friend.
So, I am still seeing improvements with my splint therapy. I am not normal and never will be due to surgeres that entailed removing bone, soft tissue and my disc. I have very little, if anything left that resembles a normal joint. The muscles will always have to compensate and maintain function. With the proper direction from Splint Therapy, they no longer over compensate or work on over-load and cause pain and symtoms. I feel better than I have in over 25 years.
(Please see 2nd post).

Last edited by Cymy Sue; 04-06-2004 at 06:13 AM.

 
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Old 04-06-2004, 06:12 AM   #2
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Join Date: Oct 2002
Location: Alabama
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Cymy Sue HB User
Re: Hello singer1..My Old post

The rest of the story.

My condition is different from most, so I thought an explanation of how I got to this point would be in order. I've made many posts on this Forum, but not in a while and I didn't know if you or some of the other newer members knew, I am a long-term TMJ surgical mess, helped with Splint Therapy.

I started out with terrible TMJ problems over 25 years ago, made worse with every surgery. I've had most of the problems, symtoms, and pain that most of you are suffering, plus the added damage and trauma of surgeries.

18 months ago, I had lost all hope and believed my life would never be any better, only get worse, enforced by a Surgeons views of my condtion.

I hope my story will help you and everyone to know, that no matter how bad it is now and however hopeless it may seem, the right Dentist or Doctor, with the appropriate Splint Therapy can help you.
They're hard to find, but there is help.


One last thought to everyone: Don't give up. Don't lose hope.
TMJD can and is being treated successfully.
The main problem is finding the right Dentist or Doctor to treat you. There are those who have the knowledge and are dedicated to treating this awful disorder with individualized care and success.
The splint that gave me my life back, cost 600$. The most expensive is not always the best treatment.

Cymy Sue

 
Old 04-06-2004, 08:28 AM   #3
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Location: Newburgh, Indiana USA
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westin4 HB User
Re: Hello singer1..My Old post

Cymy,
I have gone through the archives and read all of your posts you have done. I have been reading on the board for quite some time but just didn't post til recently. Your post you gave today is such and inspiration and you are sooooooo right! You have got to just leave the dentist if they are not doing it right. I posted a rather lengthy post in the thread about ethics and costs just a minute ago about how I had just gotten up the courage to leave yet another dentist and I think this time I might have hit the right one. I also was marveling at how you said for $600 your life is changed. That is how this new dentist has made me feel. That for a little bit of $ he can get my life back. Everyone else was treated me like they were going to have to take all of our $ and still keep my life hanging in the wind. I had said in that post how this new dentist I just found, I have been to him 6 times in 2 weeks, I go again today, he even has made me an emergency splint right in his office.......and he hasn't charged me anything! He said I was in such bad shape his first priority was to get me out of this agony and then we can see what my insurance will pay for down the road with a "real" splint and he will worry about $ then. He made my life literally turn around. Thanks again for all your valuable posts and information!
Karen

 
Old 04-07-2004, 12:29 PM   #4
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Location: Mt. Pleasant, MI, USA
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Katie G HB UserKatie G HB User
Smile Re: Hello singer1..My Old post

Hi Cymy Sue. Your story is very informative and inspirational; I hope that splint therapy continues to give you some relief from all you've suffered. From reading your post, I think we're about the same age (I'm 42) and was diagnosed over 15 years ago with TMD, but couldn't afford the treatment offered by the orthodontist who saw me. Back then dental insurance said TMD was a medical problem, and medical insurance said it was a dental issue, and blah, blah, blah - I know you've heard it before. So anyway, I was referred to another dentist who said that due to my open bite, he would grind my molars down to make the teeth "fit" together better. That was all I did for the next 17 years (except for occasionally wearing a night guard) until just last Sept., I decided to go back to the orthodontist who originally diagnosed my TMD (and seems to be the "local expert" in treating the condition) since my medical insurance will now cover some expense when ordered by my PCP. To make a long story short, I've been wearing an upper splint 24/7 since October, and will stay in Phase I until my jaw is aligned and stabilized. The bite is improving, but I still have TMD pain/symptoms, but seem to be improving. I've moved from an initial opening of 26mm to 38. Back in '87 my TMD was diagnosed as moderately/severe; as of 2003, the ortho had written "severe+++ TMD" (yes, the "+'s" were part of his diagnosis). My ortho seems pleased with my progress overall, but he's now hinting that Phase II may involve surgery. What type of surgery, I'm not asking yet, because I don't want to know. I know he does not believe in joint replacement surgery, but I'm thinking he may be considering a surgery to correct the disk alignment to a better position if the splint doesn't do the trick. I'm really hoping that surgery is not an option by the end of Phase I after reading your story and many others that were unhappy with their surgical outcome.

My heart goes out to you, and you seem to have an accepting attitude and positive outlook even with all you've gone through. I hope I can be as brave as you when the time for Phase II comes along.

Take care,
Katie G

 
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