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SURVIVING TMJD

I had severe headaches, earaches and facial pain as a small child and through my teens, but no one could find a cause. As a young adult, I was treated aggressively for sinus problems.

1977 - When I was 25, I was diagnosed with TMJ Syndrome. I had never heard of it and had no idea that the rest of my life would be affected by this diagnosis. At this time, they were no MRI's, CT-scans or Tomograms, so TMJ problems were thought to be entirely bite or occlusion related and treated with splints and orthodontics. I had a very slight overbite, not enough that would have required braces, but I had the symptoms of TMJ, so I was treated. I wore several different types of splints for about 2 years, braces for 5 and then retainers.

The pain continued to get worse. I started talking to the Oral Surgeon who had removed my Wisdom Teeth prior to the diagnosis. Orthognathic Surgery to restructure bone and correct occlusion for TMJD had become very popular. I was told an Orthognathic Procedure would cure my problems.
Again, my bite and occlusion was only off by 1mm, and I was told by using computer analysis, my facial symmetry was about as close to perfect as it could be, but I had all of the symptoms, so the surgery was necessary. There was still no Imaging being done at this time of the joints, so these decisions were made due to symptoms, pain and bad (?) occlusion.

1988 - (June) I had a Bilateral Sagittal Split with Rigid Fixation and Genioplasty. In English, this was a surgery to break both mandibles, extend one 6mm, the other 5mm and insert a chin implant to maintain symmetry. Rigid fixation means, the bones were put back together with screws.
Everything that could possibly go wrong, did. This was a 5 or 6 hour surgery which reqiured blood transfusions and swelling began immediately which required assistance with breathing.
I was left with massive swelling, my mouth torn on both sides due to life support measures, my left condyle an inch lower than the right, nerve, muscle and bone damage that I still have problems with, 17 years later, and pain that I can not even begin to explain.
As the swelling began to go down, it was very apparent that I was in a mess. My face was lopsided, I couldn't get a tongue depressor between my teeth and I began to look a little like the elephant man. I was told that part of the procedure would need to be done again as soon as possible, before I healed any further in this condition.

1988 - (Sept. 3 months later) I had the same procedure, less the chin implant. Every precaution was taken in case of abnormal bleeding and swelling. Also, this time, the bones would be put back together with wire loops and my mouth would be wired together for 6 weeks to avoid any movement and the possibility of the condyle moving.
The surgery was a little longer, I had all the same complications, too much bleeding, swelling and the condyle still slipped down. Not quite as much and it remains in that position.
I was left again with the condyle too low on the left, a severe deviation to the right, more nerve damage, numb from the nose down, surgically induced TN and when the wires were taken off, I could open 5 mm.
Needless to say, the pain increased incredibly, I developed Hyperacusis and my Surgeon said if he didn't know better, he would think I suffered a stroke during the surgery.

1989 - A few months later, they started using MRI's to diagnose TM joint problems and I was found to have completely abnormal joint capsules and only shreds of disc material hanging out of the joints. Both of the Orthognathic Procedures had been done needlessly. They had only added to the problems I had and traumatized the joints more. I was told at this point, I possibly was injured at birth with forceps and had never had normal joints.

With this information, my joints abnormal and disc destroyed, I begged my surgeon for Viteks (plastic joints). He would not do it and I thank him for that. He had already heard of problems with these Implants and would not use them. However, I was left to deal with the pain I had lived with all of my life and the added damage and trauma of the surgeries.

1990 - I developed a different set of problems that turned out to be infection in the bone, maxilla and mandibles. It had been going on for quite a while, I had considerable bone loss and had to have extensive bone grafts to keep from losing my teeth.

1991 - I was 39 years old and the pain had become so bad, I began to beg God to let me die.
I was told at this time that Arthroscopic procedures to replace the disc and repair the joint were working well so I was sent to one of the best to have another surgery.

1992 - I had a Bilateral Arthroplasty. Removal of the shreds of disc, reshaping of the jagged condyles and disc replacement with Auricular (ear) cartilage. This surgery went well. I got better, most of the pain subsided, I still suffered from nerve damage, but I felt the best I ever had.
The replacement disc lasted 2 years. I had been told that in case they did fail, which was unlikely, they would do another cartilage graft from my ribs.

1994 - I went back and was told that both disc were in fact shredding as my originals had, but they had found that the cartilage replacements did not last and they were not doing them anymore. I was told that a discectomy without replacements was the best that could be done. I talked to another surgeon who did (TMJ Concepts) Implants & Total Prosthesis, but that sounded like a horrible nightmare and one I didn't think I could handle. I spent 3 more miserable years looking for an answer.

1997- I had the discectomy.
I was not told how long the recovery would be or how much pain this would cause. I was sent into "Pain Management" and told it would most likely be needed forever.
At 45, I was condemned to a life of staying highly medicated or suffer pain that can not be explained.

( I was very thankful for the Pain Management referral. It came 10 years after my first surgeries and I had managed with OTC Tylenol and heat. No one had ever offered to help with prescription medication and you didn't dare ask for anything beyond a couple of weeks past a surgery.The pain most of my life and before the Orthognathics seemed unbearable. I can not put into words what it was like after the 2 failed surgical alterations and all that had occurred during this 10 year period.)


With a Discectomy, the the theory is that scar will eventually form where the disc were, many nerves are cut on purpose to help with the pain, but many nerves are irritated and damaged also and it takes a very long time for them to stop hurting.
I had ask about a splint several times during these last 2 surgeries and was told that splint therapy would never help me again and might even cause further problems.
From 1992 to 2002, I was told repeatedly by my surgeons that a splint would never help me again.

I continued to develop many other problems or the ones I had got worse. More severe daily headaches & pain, neck and back problems, Tinnitus, eye and nasal problems, surgically induced Trigeminal Neuralgia worsened and I started to have nerve regeneration of the nerves that were cut to help some of the pain. The muscles pulled tighter and tighter, being in spasm for many years and I could barely maintain a 10 to 15 mm opening.
Over the years, the muscles on the left side of my face had enlarged to keep the dislocated condyle in place. The muscles on the right side had shortened trying to compensate. This caused a pull or deviation to the right and these changes were visable.

I tried every alternative therapy available. Chiro, PT, Bio-feedback, Skilled relaxation and finally found a Massage Therapist who was trained to work with TMJD patients and she managed after many months to help with some of the pain and muscle problems.

2002 - I couldn't take it any longer and decided it was time for my worst nightmare I went to my surgeon and ask for Implants or a Total Prosthesis. (TMJ Concepts)
I had always believed when I could not live with it any longer, this would be an option. It was not. I was turned down due to multiple surgeries, previous surgical damage, nerve damage, fragile bone, scarring, age, etc.

I was told again that my only option for any quailty of life was to stay highly medicated. This to me, was not living.

I began to search for other possibilities. I started to find forums and message boards of people like me and worse. I began to question what I had been told about splint therapy. I kept going back to stories of people being helped and almost cured of TMJ problems with new theories and concepts with splints, realizing later, some of these were older theories that had been dumped and brought back into use, due to success.

I had no hope that anything at this point would help, but I went to my Dentist (who knew my history very well ) and ask if he knew of anything that might help me. He said he thought he did. I had known him about 25 years. He had attended to all of my dental work through all the years of TMJ Problems and Mutilating Surgeries, and I trusted him to not do anything that would harm me. He had kept my teeth in excellent condition, replaced bridges 3 times due to surgical alterations, taken care of many other dental problems and my teeth or the bite he maintained for me, had never been an issue.
During this 25 year nightmare, he had been the only one who helped without causing problems.
He consulted with several other groups*, who like he, worked with people with joints destroyed by disease such as rheumatoid and osteo-arthritis.
( He said multi-surgicals had just started to drift back to dentists for help after surgeries failed and no other options were available or offered. I think at that time, I was the biggest mess he had dealt with).
*This is a group of networking dentists across the country who have attended the Pankey Institute for many years for continuing education in Dentistry, TMJD Treatment and Individualized Splint Design. I liked this concept. You are getting the benefit of many Doctor's and Dentist's opinions, knowledge and experiences. He also incorporates many theories and methods into his practice. He's attended Pankey (consistantly) since 1988 and attends Lectures and Seminars (hosted by many well-knowns of other treatment techinques) across the country to stay abreast of the most current information and training available.
He assessed my numerous problems and designed a splint to support my discless joints and let the muscles passively reposition back to what would be as normal as possible for me. Without disc, the muscles take on the function of opening and closing.
I still had nerve pain.

I had no great hope with this, but anything was worth trying. Dec 2002, I started wearing this splint made for a multi-surgical mess. Within a few days the muscles started to relax. Symptoms started to ease up. Within about 2 months, my opening increased to 32mm. It had not been over 19mm in 20 years. As the weeks went by, more and more symptoms and pain started to go away, even the Tinnitus had almost gone. The enlarged muscles on the left went back to normal size. The ones on the right lengthened or relaxed back to normal and the visable deviation is almost non-existant. I can speak without sputtering. My face looks straight and normally shaped again.

I am not normal and never will be. I "may" always have some symptoms of nerve damage, numbness, my left condyle will always be a little low, and the whole bottom half of my face has been altered..... I live without disc.
I do not have any pain that I would consider related to TMJD. I do not have nerve pain.
I look normal again. I still have remnants of surgical damage.

I had nerve damage after most of these surgeries. It's very possible they healed, but muscle compression perpetuated the nerve pain and numbness or when the muscle compression was relieved, the nerves then healed, stopped hurting and are trying to function normally again.

2004 - about 2 years into wearing my splint, feeling started to return to my lips and lower face which has been completely numb since 1988. There is no medical explanation for this other than, "They don't know what they thought they did about nerve damage." It seems simple to me. Nerves that had been compressed by muscles in constant spasm for 17 years (or longer) are now beginning to heal, send signals, react again, etc.

This simple splint is still undoing (muscular) problems that I have lived with for most of my life.

2005 - As of a couple of weeks ago, I have complete feeling in both lips. I still have some numbness, but nothing compared to what it has been for so many years.
I believe (now) with time, I will have none at all.
(quite an eye opener to nerve damage & related numbness)

2006 - No numbness at all. I even have feeling in my chin. I am told I have most likely set some type of precedent with feeling returning after so many years of total numbness from an orthognathic procedure.

I know this is long and I apologize. It barely touches on the day to day misery, pain and fear.
I, like everyone else , have had other illnesses, surgeries, family tragedies, loses and all the other stuff we face during life.

My story may be worse than some, but certainly not as bad as so many others. I write it to encourage anyone who might ( like I did so many times) think of giving up.

I had an incredible mess, possibly from birth. It was made worse by surgeries they thought would help. My disc were shot and there was no hope to save them.
Removing them, was the only surgery I needed. Then I needed help with the years of muscle splinting, overcompensating, overworking they ( the muscles) tend to do, to try and maintain function. With this addressed properly, I am well.

I was hopeless and there was hope. I was convinced I would never be better, and there was help.

I pray the same for all.
Cymy Sue





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