I have tmjd and it is worse than it was 2 months ago! help! - TMJ Disorder -TemporoMandibular Joint Message Board

gorgee · 04-17-2008, 06:01 AM

I went to another specialist yesterday, and I had another panorex done, and it showed that I have worn down my left condyle to about 1/4 of the size it should be, and that on the right side my condyle is flipped, and dislocated.

I am quite scared now, I had a panorex a couple of months ago at surgeon in Portland, and it did not look that bad. Actually the surgeon never mentioned the left condyle, he wanted to do arthroscopic surgery to calm it down, and then he felt I had a growth on the right side, but it was actually my condyle dislocated.

The dentist wants me to have him make a mouth piece, and over time he is going to try and put my jaw back and in place, and hopefully it will fix itself by regenerating. He did say that surgery might have to be option, which I felt is not something he would ever say. He said I am not the worst he has ever seen but I am bad off.

So should I get another opinion from a surgeon again, just to cover my grounds? This has affected my life and started off my battle with chronic pain since last September. My quality of life has gone downhill, and the best I can do it take pain meds and muslce relaxants to help me maintain as close to normal life as I can. In September, my tmj flared up, and then in October the pain took over my whole body. Now I have a whole slew of dx, migraines (I have always had, and now they are worse), fibromyalgia, and myofacsial pain syndrome, along with tmjd. The doctor believes I have tendonitis is my face, and that is what is causing my headaches, and they are not migraines.

Has anybody had this medical issue with their condyles and what did you do?

Thanks,

Kassandra

Thelma-Louise · 04-17-2008, 07:43 AM

That's what is so frustrating with this condition - since drs do not yet fully understand it - there are varying theories regarding it - you often get multiple dxs and treatment recommendations. Just reading the xrays and films and knowing what to look for depends on the dr and/or lab technician.

I have read numerous web sites that certain splint therapies allow the condyle to return to its normal position and function and then reshape and regenerate. It probably would be wise to seek another opinion but do it on your own and not by getting a referral from either dr you have seen already - drs tend to refer patients within their "social network" who are trained similarly so you want someone who is unbiased. Surgeons generally want to do surgery b/c that is what they are trained to do. Specialists on the other hand can often have a "one size fits all" mentality in that they use the same treatment methods on every one - so some patients do well and others do not - in the meantime, or sometimes as a result of improper splint therapy, their condition deteriorates further.

While it would be nice if you could at least get a consensus or same dx and treatment recommendation from at least 2 drs - if you see too many drs like I did you run the chance of getting too many different recommendations (like I did) and then not knowing who to believe.

gorgee · 04-17-2008, 08:55 AM

Thank you for your help. I have my doctor, my reg dentist, 2 surgeons saying surgery, and that was before the latest panorex, and then the dentist yesterday, said mouth splint, but surgery might have to happen still. Do you or does anybody have condyle issues? I also had another surgeon who did nothing, but say I was going to become an addict, and that was horrible, and then I had one here who dx me myofacsial pain syndrome, and told me to go see a rheumatologist because of my body pain, and see him after I went there. My regular dr. does not think I need to see rheumy and says he can treat me. How do I get more help?

So at first it was about the discs, and now it is about the bone. Should I call the surgeon in Portland and ask for another appt.? It cannot be deemed tmj, my insurance will not pay for it, and it has affected my life so much. Like I said, in September it was the worst flair up and then my body went berserks in October. I have so many questions, how do I get more help and trying to get pain and muscle spasms under control?

If I might ask, how are you doing today, what treatments have you had, and what medications do you or have you taken? Also, do you have any other illnesses?

I cannot express my appreciation,

Kassandra

Thelma-Louise · 04-17-2008, 09:53 PM

I am sure there are others here that are having problems with their condyles - some just don't log in every day so hopefully they will do so shortly and offer some advice.

I have consulted with more than 20 drs over a 4 year period - the first few told me it was imagined pain and referred me to a therapist, after several months I developed neck problems and severe body pain with facial spasms - many more told me they could not help me - said they had never seen facial spasms like mine before - but still charged me for the consultation anyway, I eventually let 5 treat me - equilibraition, crowning back teeth, replacing bridges and it got worse. This is why many people say do not do anything permanent or drastic - most splint therapies can be undone with another splint - but not teeth/bite alterations and surgery.

My primary dr tried to help but does not believe tmj can cause facial spasms, body pain, muscle twitching, tingling, vision disturbances, etc - I have just about every symptom and then some. He sent me to neuros and like yourself one said myofacial pain syndrome and offered to do botox injections he thought would stop the spasms. I tried various meds my PCP prescribed - morphine, darvocette,flexeril, skelaxin, tegetol, bextra, celebrex, vicodin, diflusinal - but they were either too strong, did nothing or had other side affects. I eventually went to a Pain Mgmt Clinic at NYU Dental school and they prescribed baclofen and triavil and they seemed at least tolerable so after several months of traveling to the city I aksed my dr to prescribe them and save me the trip which he does. Recently however I asked him for something for the body pain and he said he preferred that I go see a rheumy, too.

Its not uncommon with this type of condition to develop other conditions such as cervical/spinal problems, skeletal or neuro muscular conditions (twitching, spasms, tingling, numbness, fibromyalgia, etc.) What helped intitally more than a dentist - since they were doing more harm then good - was alternative therapies such as chiro, cranial sacral and PT. This helped buy me some time as I hopped from one dr to another. Also most of the tmj drs I did let treat me referred me to their chiro, their cranial sacral therapist, etc - so I am grateful for that b/c without some of those therapies I would be a basket case by now.

I am still unable to work and am on disability - I still have facial spasms that torque my face which seem to become more frequent when I speak or move my tongue, I still have trouble swallowing and my whole body has changed in appearance but what has improved is I now can feel my face again (it was numb and wracked with horrible pain), I am seeing better, no more ear ringing or humming and my head and neck is now able to move without too much pain or cracking although its still hard to keep it down or turn it fully to either side and is still a tad in the forward position.

Most specialists/dr offices will try and work with you in terms of submitting claims so your insurance will cover them - I have found that in my area most drs don't even accept insurance any more and want full payment up front - so as a result they are more than willing to help you get a claim through by calling your insurance co and finding out what you are covered for.

There are numerous web sites under tmj, myofacial pain syndrome, holistic dentistry, neuromsucular dentists, headaches, etc that often have dr referral listings. The same is true for alternative therapies - you could try NUCCA and ICAK for chiros.

What I have found is once you find the "right" dr - you will know him when you find him - he's the one that doesn't make the weird face or raise an eyebrow when you tell him all your "strange and unusual" symptoms - he will point you in the right direction for other assistance, referrals and therapies, etc.

gorgee · 04-18-2008, 06:47 AM

Thank you for helping me, and talking things out. It started with migraines, and then a terrible tmj flare up and then my body followed. I have been up for 2 hours now, and at first I was in a great amount of pain, a lot in my legs. I took my normal pain meds, and also flexeril, and now I am not screaming in pain. I am 31, and I have 2 small boys, they are 2 and 4, and they are great. They are pretty understanding, but this has taken its toll on my marriage. At first, the pain was a 10, in the jaw and face, and then it just went throughout my body. It is amazing how I went from healthy, but had migraines this last summer, and then September 4th it all started. That is the hardest part that my husband struggles with, and how I got to this point now. Do you have days where the pain in your arms and legs make it so you can barely move, and pain is about 5-6, but makes it unbearable, and all you can do is lay down with heating blankets?

I don't know what to do next, should I follow this great dentist and try the bite splint, or should I seek another surgical opinion from an oral surgeon? I am afraid that there is so much damage that surgery is going to be an option anyway, as the dentist said that if the splint does not help then I might have to have surgery. Is there a way, now that I have so much damage to the condyle that it can be deemed something other than tmj?

I feel so bad for my husband. I have not worked in 5 years, and have stayed home since the boys were born. The copays (thank goodness they are copays and not the whole bill), prescriptions, traveling, and then the appt that we had to pay out of pocket has all added up. Like I said, it went tmj to body, and I am not any better. Like you, I have horrible muscle spasms in my face, neck, shoulders, and also my body. My husband works so hard, and I can barely keep up with the house. Most days my schedule revolves around them, I get up when they do, and I go to bed with them. My husband works different schedules, and for the most part sleeps from 4 am till 12n, then goes to work m-f 1p or so to 4-5p, and then he either plays with the boys, or takes a nap, and then on wed, fri, and sat, he works from 9p-2a. He runs a hotel with a nightclub, and this has been his schedule for 10 years. It is hard, he is going to sleep as we are getting up and he is sometimes getting up from a nap as we are going to bed.

So with your battle with tmj, have you had any other diagnosis's, and do you believe that tmj has affected your whole body, even fingers and toes? Also as I brought up my family and husband, how has this effected your whole life? And how long have you been battling this. My tmj started over 7 years ago after my mom died and then, as planned, we got married 1 month later. After all the excitement calmed down of me getting married to the man of my dreams, I thought I was the luckiest girl ever, then the depression sunk in, as I had not grieved yet, and I got sick and tmj pain started. Then over the years it would flare up, and I could treat it with ice, heat, with ibuprofen and it would go away. I never officially had it looked at, I was always too busy working at first, and then having the boys. Now here I am, and it is officially out of control. I do feel like a weight has been lifted with the xray confirming I have a real problem that is getting worse, and I have to take care of it.

I have so many questions for you, and I hope you do not mind. I applied for disability, and I started the process a week ago, I know it is a long process. I hope to help, even if it is a small amount, my husband, as he is overwhelmed and frustrated with me. I am unable to work, as I never know how much I will have from day to day, and I have a hard time standing on my feet. I have so much guilt.

I guess one of the biggest questions I have is what does my health future bring, and have you been diagnosed with other illnesses, like fibromyalgia?

Thank you, Thelma Louise.

Kassandra