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TMJ for several year...PLEASE HELP


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Old 10-05-2007, 08:34 AM   #1
SJustice1621
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Unhappy TMJ for several year...PLEASE HELP

I have been having muscular pain going on seven years now. I have gone through a lot, more than most would even begin to understand. Itís hard to write something so painful all in couple of paragraphs that has affected so much in my life. Iím not sure where to start, but to fully understand my situation I feel the best way is to start from the very beginning. I can remember it started back when I was 15 or 16 years old. A muscle, (I think the digastric) right under my jaw would sometimes push down all of a sudden. This would usually happen when I yawned or opened my mouth too wide. It felt like I lost total control of my voluntary muscles in my jaw. Once this occurred, there was a force of downward pressure in which the muscles it affected was trying to move accordingly. I would push up on my jaw until the pressure subsided and eventually moved back up. Going through this experience was more scary than painful because during these episodes, I lost control of my jaw and didnít know what to do. Unfortunately, these episodes occurred more frequently as I got older.

In the summer of 00í one of my episodes happened again. But this time was different. The muscle didnít retreat upward as usual. It stayed down. Afterwards, I didnít have any more episodes, but a couple months later I started having pain on both sides of my jaw. The pain was unbearable. I didnít know what to do. So I went to my childhood orthodontist whom I have know for years. He asked me if I was hit in the jaw recently, I told him no. He then stated that I had inflammation on both sides of my jaw and some scar tissue. I was told that my jaw was trying to heal itself. He then asked if I clenched or grind my teeth, but I didnít. I was advised to stay off caffeine and the pain would eventually get better. I did what he advised, but nevertheless the pain got worse. In the first year, the pain originated in my jaw area, forehead, back of my head (occipital), and under my jaw. At times, the pain was so intense I couldnít get out of bed. I went to many doctors afterwards. I was given neurotin and depression medications, which had no effect. Since I couldnít get any professional help, I decided to do my own research.

I later found out about TMJ and decided to see a specialist in my area. The doctor told me, that I had a special case due to the fact that I didnít grind my teeth. He stated that with the use of a splint, my case would get better. I used the splint everyday for nine months, but the pain only seemed to increase. The pain now progressed to my neck. Thus my neck became stiff and difficult to move. I then noticed cracking in my ear when I opened my mouth or flexed my jaw muscles. Cyst then began to appear under the sides of my ears and I had swollen lymph nodes as well. I began to have trouble with my sinus also.

I then went to see an ENT. The doctor took an x-ray, and inflammation soon was discovered in my sinus area. He gave me a steroid nose medication for it. On the follow up visit, the inflammation was still there, so he decided to give me an MRI of my head and neck. The MRI revealed the inflamed areas, but no structural damage to my TMJ. I didnít know what was happening, but all I knew that my situation was declining quickly. The pain was growing stronger and soon began to affect other muscles in my body. I also had physical changes in my body as well. The inside of my mouth felt as if it was getting smaller and I would constantly have to pull the cheeks off of my teeth. This caused irritability in the lining of my mouth. I would always find myself biting my cheeks due to the fact they were always pressed up against my teeth. I would always bite the sides of my mouth because of this and they would eventually bleed and scar up. There also would be the outlines of bite marks on each side of my mouth. On going changes affected teeth, bite and appearance.

In 2003 through 2004, I began to have back pains. The first few times were gradual as if someone was going down my back with a feather. I began to notice that even walking was cumbersome. I even started to have pain when I sneezed. The most severe occasion, occurred when I was in so much pain my back locked up. I couldnít move at all. The most I could do was lay down. If I stood up, it felt like my back would snap. I was taken to the emergency room and took x-rays. The hospital diagnosed my episode as back spasms and gave me a muscle relaxant for it. Although I havenít had a back spasm since, the pain continued. The pain I felt as if it was spreading down affecting each muscle in my body.

In 2005, I felt everything was drastically wrong and I had very little hope. I saw a neurologist and explained all that I had been through. He assessed my situation and gave me a steroid shot inside my mouth. I didnít notice any difference in how I felt until the very next day. When I woke up the next morning and got out of bed, I felt 60 pounds lighter. I could actually move my body without restriction or discomfort. My jaw still felt weird though and out of place. I began to see a change in my self and others around me. Only then, I realized how restricted I was. For the first time, I finally felt normal in five years. I felt I could once and for all start my life again, but it was not to be. The pain and all its discomfort started coming back. I told my doctor the news and I received the same treatment again. This time, no change took place at all. I donít know if the doctor gave me the same dosage or injection. I kept receiving shots for about three to four months afterwards until I decided to give up. Afterwards I went to see a pain specialist. He told me that he or any other doctor couldnít give my steroid shot due to the fact I had enough steroids for a whole year. I didnít know if he was telling the truth or not. All I wanted was a way to end the pain. The doctor wanted an MRI, but I didnít want to go through that again. (I had six up to that point.) He only seemed to be focused only on that for some reason. Now Iíve been coping with this situation for seven years.

Throughout this time, I found some things to give me some relief, even for a brief moment. I would take Nyquil (w/pseudophedrine) and pain medication. I would take a small towel and roll it up and put in under my chin. Then I would put pressure on it and push upwards with my hand, like I did in the past. I would lay on a pillow and have it positioned against the back of my head, which would relieve some of the pressure.
I have often wondered if I can go forward with no answers. I came to the realization that I cannot


** What I feel that has gone on is that my jaw has been pushed down and is not aligned correctly, which is causing strain on the muscles in my face, neck, and backÖthis pain was not sudden by no means, it occurred gradually and progressed into what it is now. **




I am currently seeing a Cranial Chiro, and am in the process of seeing a neuromuscular dentist... if anybody can give me some advice on I would appreciate it.

Thanks,
Ryan
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Old 10-05-2007, 10:16 AM   #2
Thelma-Louise
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Re: TMJ for several year...PLEASE HELP

Well Ryan - what happened to you over a course of several years happened to me almost exactly as you described it over a 6 week period in 2004 and I haven't been the same since. There are many here on the boards who have gone through something similar and are still dealing with it so if its any consolation at all - you are not alone. I too appeared to have suffered some kind of injury to my lower jaw seemingly over night - what started out as a crooked or sideward yawn during the middle of the night led to involuntary and uncontrollable tongue and jaw movement which evenutally turned into facial spasms and then facial and cranial derangement and cervical and spinal misalignment. It was quite scary and extremely painful as it progressed - especially when I realized not many drs know how to treat it or stop it from progressing. I have been to more than 40 drs and tried various dental and alternative treatments to correct it and/or at least treat the widespread symptoms it has produced over that past 3 1/2 yrs and currently can not work as a result. Its a life changing condition or problem as you well know and can attest to.

I wish I can offer more advice but it sounds like you are doing exactly what I am doing - it hard finding the right drs to treat both the structural and alignment issues as well as the jaw problem. The obstacle we face is that most drs do not fully know what causes these types of problems and can only treat it using the best of their training, knowledge and experience. Many understand it in terms of the progression of the symptoms but stopping it and/or reversing and/or correcting it seems to be the difficult part. So its not unusual to go from one one dr to another over time.

If you have not done so yet, you may want to try a Pain Mgmt clinic ususally found in local teaching medical/dental colleges or universities and hospitals - I know meds do not fix this problem but an anti-inflamatory and pain meds or muscle relaxers that can be used long term may help reduce the intensity of the pain and discomfort you are in - they may also prescribe an antidepressant - not to treat depression per se but b/c of its abiity to affect the pain center located within the brain. Again - I am not advocating meds as a fix to this but it can make coping and dealing with it a bit easier.

Just as an FYI - get copies of the actual films of your MRIs and bring them to drs in the future so they do not keep requesting a new one be done or sign a release form and ask the dr to request them from the lab going forward - its easier and safer as you know then repeating the tests.

I wish I could be of more help but unfortunately although I have made some progress in recent months its not enough for me to be be able to tell you to do this or that any differently than what you are doing - I am currently being treated by a cranial chiro and a tmj dentist - my 3rd and 5th of each, respectively - although I have consulted with many more drs who offered no help and pretty much said nothing could be done or they didn't know what was wrong with me or presumed since there was nothing abnormal with any of my tests - that it must be all in my head. I was stupid enough (and desperate enough, I guess) that I even paid the consultation fees for such garbage - but that as you may know - is one of the many frustrating stumbling blocks we are forced to deal with along with the condition itself.

Please write back and let us know how your treatments are going and feel free to share your feelings, sentiments, frustrations, ask questions, etc - many of us find comfort and encouragment in each others stories, experiences, struggles, knowing we are not facing this alone, etc.

TL

 
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