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LIVING WITH TMJD..........II
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 Cymy Sue |
LIVING WITH TMJD..........II |
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Posts: 7276 (06/06/05 13:05:46) Senior Member
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lu jones |
Re: "Living with TMJD".................Our Histori | ||
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Posts: 3153 (06/07/05 19:58:23) Senior Member |
Here is Lu's story. I am 49 will turn 50 in August. I have not had the surgeries many of you write about. However I have lived in mostly constant pain since MArch 1997.
I had a back molar break at that time. It was a tooth that had several fillings and it broke really low near the gum line. My dentist told me the only way he could get a crown on it was to have the gum cut back. That was a thrill!!! After getting a crown in place I kept complaining to my dentist that the tooth still hurt. He couldn't see anything wrong with it and sent me for a root canal in Sept 1997. That solved nothing,my tooth ( I thought) still hurt. Finally in July 1998 my dentist made a soft bite mouth guard. Just like the kind football players wear. It seemed to help me for a short time. By MAy 2000 I was sure if I had the crazy tooth extracted all my pain would go away. So I had the broken tooth with an expensive crown and root canal pulled. In Feb 2001 I was fixed up with bridgework and thought my mouth troubles were over. Wrong!!!!! Sept 2001 I chipped my front tooth when biting into a soft sandwich. Still my dentist just smoothed the rough spot. He didn't mention he thought I might be a night grinder. I'm sure all my life I have clenched my teeth. Finally in JAn 2002 I could stand the pain no longer and my dentist sent me to the pain management DR I should have seen back in 1997 when the tooth broke. His diagnosis of my condition is Cervicocranial Syndrome- Myofascial Pain Syndrome - TMJ articular disc disorder. I'm so thankful I finally found a DR who knew what was wrong with me. He suffers with TMJD .I sleep on a special pillow on my back. Wear an upper hard bite appliance, do stretching neck and shoulder exercises. He has recommended the hot tub to relax tight muscles. I also go for monthly acupuncture. In May of this year I asked the DO that does my acupuncture " Is this all I can do for relief?" He did some more xrays of my neck and says I have cerviocogenic headaches. He wants to do radio frequency ablation on the nerves of my neck. I'm too afraid to try that treatment. So I just keep on. My jaw and neck almost always feel like I'm in a vise with alot of pressure on my right jaw the most. Thanks for listening.Lu |
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euclid0407 |
Hi to Everyone | ||
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Posts: 43 (06/08/05 12:26:51) |
Hi,
I just joined this list yesterday. Since few people in my town know much about TMD, I am doing as much research on my own as possible. I am 46 and live in Yuma, AZ. Even though I was diagnosed only last week with TMD, as I look back, I think that I have had it for a while, although not as bad as now. I was in a very bad motorcycle accident about 25 years ago. I broadsided a car on the freeway going 60 mph and flew 120 feet in the air. I had no helmet and was fortunate to survive with only some dislocated toes, cuts and abrasions. A few years later, I went to a dentist and had a root canal on my front tooth, had my wisdom teeth pulled and also had a few fillings. I had a headache after that for almost 1 year. I saw many doctors and the conclusion was that I had a headache due to unknown causes. Over the years, I have had sinus pain, ear aches, numbness in my hands, and headaches, but learned to live with them. A few months ago, I cracked a lower back molar and went to my dentist. He placed a crown on the tooth and the next day, I was in severe pain. After a week, and round 1 of antibiotics, he started a root canal. While I had the temporary filling, I woke up one night and was clenching my teeth so bad that I had my upper molar stuck in the temporary filling. Severe pain. I called my dentist and after round 2 of antibiotics, he finished the root canal. A week later, the pain started to spread to my face and I had shooting pain in my eye. I went back to my dentist and after round 3 of antibiotics, they pulled the tooth. In the meantime, I started to have pain in a lower molar on the other side. I went to a dentist in Mexico (my insurance money was all used up for the year by this time) and they replaced the filling. The next day, I now had pain on the other side of my face. They sent me to an endodontist (in Mexico) and I had a root canal on that tooth. The pain actually went away for 2 days but then returned. I went back to the endodontist and he x-rayed the tooth and said that there was nothing wrong with the root canal. He suggested that I was having nerve pain and that I probably grind my teeth. My dentist fit me with a nightguard and said I would feel better in a few weeks. In the meantime, I read about the NTI-TSS and went to a dentist in San Diego to get fit for one. She asked a lot of questions and suspected that I had TMD. She referred me to a TMJ therapy center in La Mesa and they diagnosed me with TMD. Unfortunately, they were in the business of selling orthotics for $5000 and would not help me more until I agreed to pay. They even offered me financing at a local bank. I felt like I was at a car dealership. Everyone who worked at the clinic were wearing orthotics and they would say, "Well look, I am wearing them!" So now I am back in my small town and it seems that few people here know about TMD. My insurance does not cover TMD treatments and I feel like I am fighting this by myself. I currently have facial pain, headaches, numbness in my arms and hands, insomnia, neck pain, shoulder pain, sore throat ... I am a college math professor and I don't know how I made it through last semester. It was pure hell. I am hoping to be functional by August. Unfortunately, talking seems to exasperate the problem. Today, I am trying to find someone who will make me a splint. I am reading "Taking Control of TMJ", by Uppgaard and am doing the stretches, exercises, posture improvements, ... I have also made appointments for physical therapy and massage treatments. Any suggestions folks may have would be appreciated. I am thankful that this list exists. It is basically the only support that I currently have. |
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am6845 |
Re: "Living with TMJD".................Our Histori | ||
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Posts: 353 (06/25/05 21:03:51) Member I |
My Story Angi Harrover
I think it all started when I was 16 mabe even earlier. I was in a car accident where a farmer backed out in front of me while I was going 55. He put a v right in the middle of my Suzuki sidekick. I got whiplash out of that and was real sore for a while. I was in 4h and FFA and showed various market animals and also showed and trained horses. I have been hit in the face by Steers and Dairy cows and Horses. I have been bucked off of and Fallen off of Horses. So I think a lot of my problems are a combination of things. About 1992 I noticed my left Joint was popping when I ate I was on my own and had no insurance but didnt really think anything of it as it did not hurt with the popping. In 1994 I started having lots of headaches and the popping started to hurt Once again I had no insurance. I was living in West Va working as a race horse rider and saw a dent. There thats where I got my first splint. I went through 3 diff splints with him and spent over 5000k at this point. I moved back to Ca.. As I Was broke by then. But in the state of California the law that made TMJ a coverage didnt pass till 1995. 1997 I started working For the California Department of Forestry as a wildland Firefighter. That was a rough job and really hurt my neck and back hiking up hills with a 60 lb hose pack while wearing wildland turn out gear in 110 degree temps. I was hit several times with Fire hose. The good thing was that I had insurance then and at that time I was only being treated for Headaches. Fast forward to 1999 Earlier in the year my Left joint started locking when ever I ate anything crunchy or chewy. My Dr. Then started the NSAIDS we tried several different types and something for me to sleep. I have been at a closed lock since the fall of 99. I got Married to my husband in November of 1999. In Feb of 2000 I started going to Physical Therapy with no success at that time I was between 20 to 23 mm opening. I was refereed to an OMS. In April I saw him and my opening was 25mm that happened to be a good day. I was dx with internal derangement of the left tmj with a chronic closed lock. I was scheduled for an Arthocentysis pending insurance approval. It took a month and with Scheduling I was booked for Beginning of May. 3 days before I was supposed to have it done I found out that I was pg. Everything stopped. No Drugs No help. I suffered through out the pg. I wound up drinking ensure just to try to gain weight. As I was not eating enough. I gained a total of 10 lbs with My First son who was born on Dec 3 of 2000. I nursed him so I still couldnt have and drugs.By the time I was done Nursing him the OMS no longer carried my medical ins so I was on the hunt for another OMS. When he was 6 months old I stopped Nursing and Had to have all 4 of my wisdom teeth removed due to them being impacted and rotting. Partly because I couldnt get a tooth brush between my teeth to brush. I was in so much pain I was givin more NSAIDS and my opening was at 22mm. I was on several different NSAIDS and several pain pills. Finally in April of 2002 I found an OMS At that time it was a good day and I was at 29mm opening with a overbite of 2 mm and a overjet of 1 mm. The xrays results indicated deficient joint space in the right and left joints and Mild crepitation of the left tmj. The Dx at that time was Bilateral disk displacement without reduction. Bilateral internal derangement of the tmj and traumatically induced synovitis (bilateral).I was supposed to start another splint that would have cost me 1200 but that was pending if I could get my opening bigger for them to fit me with the splint. In Aug of 2002 we filed for BK. And we had to drop our medical Insurance. I had started NSAIDS again in 2003 but found out in May I was pg. Again No Drugs and NO help. I was on my husbands insurance then and we only have it during fire season. So I went on the States AIM program. That Dec. At 31 weeks I started pre term labor. I was on meds and bed rest off and on and was in and out of the hosp 1time a week. Michael was born at 35 weeks on Jan 14th of 2004. He was having problems breathing and was rushed to Valley Childrens Hosp. He spent 6 stressful days in the hosp. I was pumping to feed him as he was used to bottles by the time we brought him home. I had to do this as he was a preemie and needed all of the brest milk he could get. Finally in the fall of 2004 I started having sever grinding in my left joint and my right joint was hanging up and felt like It wanted to come unhinged. I was told to start NSAIDS again and some different pain meds. We dont have insurance over the winter so I was stuck. 2005 Dr tried more NSAIDS and finally I had to take a stand. I told him no more of this I wanted a referral for an MRI and a referral to an OMS. He was hesitant I made him hear my jaw and showed him how mush I could only open and he gave in. Now the battle with INS began. The First Denied the MRI I filed an grievance and an appeal with insurance while the Drs office was going to re submit. They said the alternative treatments were available. NSAIDS and Splint therapy. Hello I have Been there done that for several years. They Finally approved me to see an OMS but the soonest apt. that I could get is Sept 1st . I went back to my Dr. And told him that I can not sleep the headaches are getting worse and the pain is getting to me. Thats when he gave me Neurontin 300 mg 3x a day and Norco for the pain. He also gave me Ambien 10mg for sleep. I have found only being on the Neurontin for a few days that is does help a little. Some times I cant stand it but. I am coping. I am at a stand still with 15 days left in the grievance process for the MRI. And waiting for a cancellation for the OMS. I have been eating soft food and mush for most of the last 7 years. |
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FPDChief |
Re: LIVING WITH TMJD..........II | ||
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Posts: 815 (10/29/05 11:16:29) Member |
Hello, my name is Carol. Single, 51 years, mother of 2 cats, secretary. I've been coming to this site for a few weeks now and I do find it helpful. Just knowing that others know what TMJ is really all about helps tremendously. My TMJ started just after I graduated from college with a Master's Degree in Music, Bassoon Performance. I had started a job to help me pay for auditions (and bills) when one day I woke up in excruciating pain and my mouth locked. I still went to work and tried to function normally. Thankfully (or at least I thought it was thankful), I was playing in a summer orchestra where the other bassoonist was an orthodontist. I told him what was happening and at break, he checked my jaw and bite. He said I have TMJ and explained it a little bit. Everyone back in 1980 claimed that TMJ was new and everything was experimental, etc., but my bite HAD TO BE FIXED.
Okay, I saw several oral surgeons, dentists and orthodontists and they pretty much all agreed. I even saw the head of the Jaw Clinic at the local university and he agreed. There was some disagreement over the type of surgery I should have. Since I have a very small lower jaw, my ortho (the bassoonist) wanted to expand the jaw. I would wear braces on the bottom teeth for about a year and then have surgery and then braces on top also for another year or two. The big problem for me and others was that my ortho was pushing another surgery to reduce the gun space between my nose and top teeth. There was absolutely no guarantee that I would be able to even play the bassoon afterwards and I had so many dentists not like that part. Well, I had braces put on the bottom teeth. Nothing was done to reduce the pain I was experiencing, so for 3 years I lived in constant pain that I would rate a 9, almost 10 because I was becoming suicidal. I was still playing my bassoon in orchestras and working my job in a bank talking on the phone about 6 hours out of 8. I was miserable and became a first rate grump. I think my faith is the only thing that got me through those 5 years. Anyway, I decided not to have any surgery after a year and braces were put on my top teeth. I almost had to quit playing the bassoon at this time for every reason you can imagine just about. After 2 1/2 years, the pain was getting worse and I asked the ortho if the braces were ready to come off and he said yes. Halleluah! I probably thought that the pain would go away or lessen when the braces were removed, but it didn't. I started going to the local university's jaw clinic to have them do anything they could and they wanted to started out with "conservative methods." I heard those two words too many times in the past 25 years, but I went with it and had a flat plane upper bite splint made. I must have seen this resident at least once a week for 2 years and tried every imaginable bite splint at the time. I started a new job, which did help the stress level at first. I was "tricked" into seeing a chiropractor. I was afraid of them, but my boss just put the two of us together so I went for it. Well, he did help, tremondously. All he did was crack my neck (which usually felt great) and massaged inside my mouth back at jaw. He finally broke up the continuous pain. I saw him for about 2 years constantly before I had to move to another city. The story the next few years is about the same thing repeated over and over. I tried to find a TMJ "specialist" and whenever I thought I had, those two words, "conservative methods" were said, several bite splints made, and my money taken. No one helped me except I had my first MRIs and Topography taken, which did show a lot of damage to the TMJ and displacement of the disk. A few years later I decided I wanted surgery. Something had to help. I found an orthodontist who was supposedly a TMJ guy. He wanted to do the surgery that the first ortho recommended short of the nose part. But, he said something that I didn't want to hear and probably knew - that I probably would always have some sort of TMJ even after braces and surgery. For some reason, I knew he was correct. But I still decided to go for it and met with several oral surgeons who all gave me different surgeries they wanted to do. Well, it all came down to I could not afford any of this. My insurance would only pay for certain things at a certain amount and it wasn't nearly close enough. I became extremely depressed as you can imagine. I did have this ortho make me a new bite splint as the last one was a joke. He did and it did help. I went like that for some years with days with no pain, little pain, lots of pain, and excruciating pain. I was able to handle most of it except the excruciating pain. I did even go a whole year with no pain and no TMJ action. Wow!! It was wonderful, but of course, didn't last. A couple of years ago my TMJ went crazy again and it has become a nightmare. I just cannot cope with the pain this time (old age?) and I decided I was going to take pills and looked for a doctor to help me. That ended up being a major nightmare. I had not taken any drugs for 23 years, never been addicted to anything, including alcohol, everything was documented clearly with x-rays, but no one would help me. I started to get suicidal again. The last few months could have been quite interesting if my life hadn't been at jeopardy here. Everyone I saw trying to get pain medication was either rude, wouldn't help, didn't know how to help, and all thought I was a drug addict even though I had never taken an opiate in my life yet. I tried everything else I could think of in my surrounding area and was getting some help (physical and massage therapy, sleep testing, new bite splints, injections). One day my D.O. called and left a message that I had an appointment with a neurosurgeon the next week. That was a pleasant surprise. Part of me was very excited and the other part thought, "here we go again." This was just a couple of months ago and my appointment with him was wonderful. He understood everything without me even having to go into very much detail. He started me out on 10 mg of methadone with Vicoprofen for break-through pain. So far, it isn't helping enough, but he said we would have to keep working to get the proper dosages and type of drug(s). Wow, I'm in love. Still in pain, but at least have some hope. After 25 years - hope to have this pain under more control and so very thankful that someone finally understands. That's where I'm at right now. I'm still having problems with depression and pain so my days are not perfect (yet). I see the Neuro next week and I hope for an increase in medication. I'm also convinced that clenching and grinding is the major cause of TMJ so I am working on sleep problems and control. It will be interesting. Sorry for the very long story. It, unfortunately, is all true. God bless... Carol |
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PJinPA |
Re: LIVING WITH TMJD..........II | ||
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Posts: 9 (11/07/05 15:57:42) |
Hi,
I just joined a couple of days ago. I am 46 and about 15 years ago started getting daily headaches, and what felt to be a band across the back of my head tightening. I was in an extremely stressful position at the time, so just chalked it up to that. I was taking ibuprophin almost constantly. A couple of years later I was referred by my dentist to an orthodontist here in town. He made me a splint and put me on Elavil. The treatment seemed to work for about 3-4 months, then slowly stopped. About the same time I started talking to my family physician, and we tried many different anti-depressants, etc. some of which were supposed to also be good for pain. A couple of years ago she also sent me for Xrays, and seeing indications that I had a muscular/skeletal issue with my neck, started me on Vioxx. That medication really worked for me, and at one point I realized that I had been pain free for a week and it was almost like a miracle. Of course about that time it was taken off the market. I still don't know what to think about all of that, but if given the chance I would probably take it again regardless of the possible problems - that's how great it felt to be pain-free for a little while. Of course, it may have stopped working after awhile, who knows? But none of the other Nsaids have worked for me, and I tried them all. About a year ago, my Dr's office referred me to another TMJ specialist here in town, a dentist who currently works only with TMJ patients. They did xrays again, and he made me another splint, and put me on Elavil. This time I didn't get much relief at all, so they upped the Elavil dosage. I dislike the side effects from this drug, so stopped taking it. I've also stopped going to the specialist, since he charges $$ every visit and I've yet to find out if my insurance is going to cover any of it, though they did cover about half the cost of my first splint treatment. The last time I checked with my dr., she was ready to send me to a pain mgt. specialist. I haven't spoken to her since to get this referral.....because in the meantime some other problems have cropped up and I now have to go to a GI specialist to check out some elevated liver enzymes. I'd like to get that under control before starting any new meds. Right now I take Soma about 3 times a day most days, and I do get some relief from that, though not long lasting. I'm glad to have found this place.....it seems like a very caring community, and I have found more info here than from any healthcare professional. I hope this changes soon!! |
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Cymy |
Re: LIVING WITH TMJD..........II | ||
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Posts: 2283 (08/19/07 10:13:32) ezOP/Moderator |
My name is Kathy(Scrib501)
I am soon to be 51 yrs old. I have three grown children,24,25, and 26 years old, and I am married for 27 years. My TMJ was diagnosed about 20 years ago. As I was growing up my family never had money for proper dental care, so when I was about 19 or 20, I had to have my wisdom and all the teeth around them out, which resulted in my bite being off. Had a mouthpiece made, never could wear it comfortably. So after I married and switched dentists, my new Dentist said, "Do you get a lot of headaches?" And with three small children at the time I said yes. He said "Wow your bite is really off, we need to get you a mouthpiece". I have had several mouthpieces/plates made since, as one would wear out. I managed it ok for years. When I would get a lot of pain, headaches, I would just get my mouthpiece/plate adjusted, and be fine until last Dec, (about 9 months ago). When I started with pain, and a kind of crunching/crackling noise coming from my right jaw area. I did forget to mention, I have had popping since I was diagnosed, but it always popped back in. When I first saw my dentist, who is not my original Dentist that diagnosed me. He since retired. It was his associate, who was in dental school when I was diagnosed, and interning there. My dentist said your not popping so it is not your jaw. That is when it started. He said it is your sinus or your parotid gland, etc. I had a lot of pain then. I must note also that I have other major health problems, mainly an auto immune disease called Sarcoidosis. In fact I have it in my lung and skin, and arthritis in my joint, including my jaw joint. Also, I forgot to mentioned I was on steriods about three years ago for 2 years for my Lung Disease. the doctors think that it really took a toll on my bones and joints. My lungs are good right now, which is good with the surgery coming up. Well after Doctor and oral surgeon helping, finally a MRI was ordered in April, showing a dilocated disc, and arthritis. I started PT at pain level 10, saw a highly recommended oral surgeon at the U of Penn Hosp. At that time my pain level was about a 5. The PT really helped. This surgeon said your disc can't be put back. It is too far dislocated. We will have to take out the disc, and put a replacement in, but not now. You are not bad enough. Wait until you are at a 10 level of pain or close to it. About three weeks ago I started getting there. I started noticing I was bone on bone. I could feel the bones rubbing together. And when I chewed I had so much pain. It has gotten worse. I called and talked to one of the Doctor's interns and he agreed that it is time to schedule the surgery. Being they are such a busy place, the first opening is Sept 13. And they said they'll call if there is a a cancellation. well here I am waiting, getting worse every day. I can't chew anything. I am taking my major pain med when it gets bad. I try to get by with Tylenol first, but most of the time that does not work. I do heat a few times a day. I have been off work all summer because I work at a school as a Special Ed Teachers Assistant, and I love my job. I have to go back next week, because I am changing schools and classes. The school is very understanding, and the teacher I am going to work with is also. Because we will only be in school a few weeks and I have to take off, and I now will get only 5 sick days. I have consulted my ENT who is a personal friend of mine, my family doc, who I just love and my old retired dentist, who also is my neighbor. They all feel I need to have the surgery done. I am worried, not knowing for sure what is ahead of me, so I joined this group for help. My summer has been very stressful. Besides my jaw problem, my middle daughter and her husband were deployed to Iraq, and my daughter had to be medavaced to Germany for a biopsy, because they thought she had Lymphoma. The biopsy was neg. and she is back in Iraq, and fine. She does live away in KY, and I am in PA, but I could always call her, and now I really miss not being able to hear her voice, and of course I worry about her and her hubby. I pray for them and all of her soldiers. I do get to talk to her on the computer.I write to her every, and email her, and my family and friends do also. We also have been sending packages. If you are taking time to read this please say a prayer for them and all of our soldiers. I am so proud of them. I am very close and proud of all my children. Thank you all for being here for me. If anyone has gone through a discectomy and a replacement please let me know, and share your thoughts with me. God Bless, Kathy |
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We are a peer support group. We hope you find this Group helpful in learning about this disorder and sharing your experiences.
Disclaimer: We cannot replace a Professional Diagnosis by a Doctor or Dentist, nor can we suggest appropriate treatment. We strongly encourage everyone to see a Professional for diagnosis and treatment regarding Temporomandibular Joint Problems.
Disclaimer: We cannot replace a Professional Diagnosis by a Doctor or Dentist, nor can we suggest appropriate treatment. We strongly encourage everyone to see a Professional for diagnosis and treatment regarding Temporomandibular Joint Problems.
