I have spent most of the day reading posts. You guys are a wealth of info!
Here's my story:
I am a 33yr old female who has had rheumatoid arthritis since a teenager. For those who don't know-it is an autoimmune disease that affects joints and organs. The RA has affected my knees, elbows, hands, ribs, lungs, heart and eyes. Lucky me! And of course...the jaw.
I am very lucky in the fact that I have a great healthcare team. They work together and communicate to make my life easier. The jaw was an issue when I was a teen. It has varied in severity, but the past 5yrs is has been awful. The hope was that it was more of a muscle issue. Not the case. My oral surgeon has gone in twice. Bascially, this was just to remove the diseased tissue. He did exam the joint on both sides and was shocked by the amount of damage the RA has done. Being fairly young, the rheumy and surgeon wanted other opinions before doing a joint replacement. So, I went down to Duke and also to MCV(medical college of va). Everybody at this point feels that I need a bilateral joint replacement using TMJ Concepts. I am still surprised the the jaw is my first joint to be replaced. According to the drs, RA does not usually attack the jaw so quick and hard. They say it is often one of the last ones. Hmmm.....
So, the "Cast of Thousands", my doctors, have agreed the MCV is the place for this to be done. According to the surgeon there, it will be a two part surgery. Does this sound right? I haven't read that others have done this is in two parts. I teach, so the plan is for stage one to occur over spring break(first week in April). Surgeon will go in, and remove the diseased tissues and fluid. While in, take measurements for the joint. I will spend a few days inpatient. This is because of the lung/heart RA issues. Dr. said 7-12 days recovery and then a liquid diet for about 10 weeks. Dr said I should be able to return to work until stage 2. 2nd surgery will be done the first week of summer vacation. This will be when the implants are put in. Goal is to have me back at work for the first day of the next school year.
So, I am a bit overwhelmed by all of this. My opening right now is 19mm. But, this is achieved by being a large amounts of steriods. I have a very hard time with my speech by the end of the day. I teach biology, so there are some days where I give notes/lecture. By 6th period, I just can't move my jaw to make some sounds. Very frustrating! I am hopeful that this surgery will solve this problem.
If you have read all this, thank you.... Not many people "get" how painful TMJ can be. So many people have TMJ issues, but very few have life-altering TMJ. It's like when I say I have rheumatoid arthritis and the person responds with..I have arthritis in my knee...
OMG I suffer just as you do. You ARE RIGHT, this is HORRIBLY painful. I have done physical therapy, I use moist heat at home and I do my jaw exercises. A dentist threw my joints OUT during a procedure about 8 years ago, and now with the arthritis (I have Lupus and RA too ) I am suffering beyond belief. I have NO dental insurance and so the oral surgeons cannot help me in the office to do anything. In short, I DO NOT have a great team of doctors. I need dental work, but cannot keep my mouth open wide enough or long enough to get THAT done and I am at a loss!
I have a new night guard to help relax my jaw. I am in the New England area and I hear that Tufts is a good hospital. I have medicare as I am on disability and I too am thinking I need replacement OR something that will help. The pain clinic does injections which I am supposed to be lining up BUT I am afraid!
I HOPE everything goes well for you. I just want you to know that I understand and I am sorry that you have too suffered SO much!!
My rheumy has used the term Rhupus with me in the past-ra+lupus.
I would think your health insurance would cover the jaw situation. That is how mine is billed-never through dental. My drs have always said I am lucky to have the RA diagnosis when it comes to the jaw since coverage can be difficult.
Hate that you can't get help. Definitely question the insurance coverage.
What RA meds are you on? I have moved up the biologic ladder. I have been on Rituxan for the past year. I liked the fact that I only had to get the IV every few months. I had been on Orencia which was a monthly IV med. Unfortunately, the Rituxan has not been working and I might got back to the Orencia. They were having a hard time finding a vein and had mentioned a port if I stayed on it. Hopefully my veins have rested up!
I am on disability and I have medicare. They fight to NOT pay for a LOT Of things. They would not even cover my mouth guard. I have no dental ins. and I have to rely on the clinic. I cannot touch anti-inflammatories due to my stomach ulcers. I am not willing to try Humara or Remicade because I have read that there is quite an increase in cancer of many kinds when taking these medications. Plus, they suppress our immune system which is why they help the RA pain, but that makes us more suseptible to other illnesses.
I really worry about all of these new meds. I know we need help, but I like to see a medicine be out for a while before I am willing to try it. I HAVE made exceptions, but my rule of thumb is not to just take something new without seeing what the long-term effects of the medicines are.
I just found out that medicare will give me an eye exam but will do nothing to help me purchase glasses.
Maybe medicare would pay for a surgery, that I am pretty sure of, but they are NOT good when it comes to dental or any help that I need in that area
I don’t know very much about rheumatoid arthritis, but I would have thought that the similar methods of TMD diagnosis and treatment should still apply to you regardless of the rheumatoid arthritis. The TMJ dental treatment I am having is to reposition my lower jaw so that the joint can function better. If the TMJ isn’t lined up properly it cannot function as it should, and causes clicking and cracking, which then causes arthritis in the joint. I do respect the rheumatoid arthritis and arthritis are different. Surgery by itself doesn’t help to realign the jaw. I would suggest seeking the opinion of a specialist TMJ dentist before having more surgery, to see if the alignment of your jaw is a problem.
Rockyd---Welcome to the tmj boards....Sorry you have to even be here, but hopefully you can gain some more insight on this horrible dysfunction..BTW--my mom has RA, so I know what you are going through, and I pray that you can get out of the pain soon... BTW---I agree 100% with Amanda....If you have the time, and costs for a consult, PLEASE before going the surgery route, consult with a tmj specialist on your condition. What they can do for you is make a neuromuscular orthodic to bring your lower jaw down and forward a bit, out of the fossa, (socket..) and let your condyles function in a better position. After phase 1, you can either remain in a permanent orthodic, or choose to reposition your teeth to fit the new mandible position. (usually with braces, crowns)...
I don't know where you are located, but some of the best tmj docs are :
Dr. Clayton Chan, las vegas...Dr. Martin Fraschetti, Mi..Dr. Rosemary Rojas, Ca. Dr. Brock Rondeau, Canada...My doctor is Dr. Paul Insolera, Wisconsin. ....Please if you have any questions, send me a line. Good luck to you, and I wish you the best of health... Later, j.
The problem with it being rheumatoid is that it is truly an immune system issue. Leaving it alone at this point isn't an option. The level of disease activity in the jaw joints is triggering the Ra to be active elsewhere. I have run a fever for months, my bloodwork has come back with multiple issues. I was hospitalized due to pericariditis(heart inflammation) over Christmas and I have been in and out of the hospital this past year due to RA complications-mainly lung inflammation. One of my meds which is actually a chemo med has caused other complications so I have to go off it. This is not helping the jaw situation.
I have had multiple face to face consults, and I have given my dr. permission to send my file anywhere he wishes. All have come back with the same answer. When I go the referrals I have to see at least 2 drs if not more at that visit...rheumy, OS, cardiologist...whatever they feel is necessary that day. That's why my referrals are associatied with the well known Hospitals/not an individual OS. Duke, MCV, Hopkins.... It is not just a TMJ issue.
The only real "cure" for a severely diseased joint in RA is to remove and then replace it. Any adjument to the jaw just opens up more space for disease activity. Joint mobilizations are contraindicated due to this fact. This will then trigger an overall body "flare" which is what I have been caught in already during this past year. Leaving it alone just isn't medically possible.
I know that many of you guys are anti-surgery, and rightfully so! I have read your posts and I hate the difficulties that many of you face. It's awful to be caught in a cycle of pain and of nobody able to help you. I also respect your opinions-I hope I don't come across as argumentative.
I know that there might not be a huge/or any improvement jaw wise following the surgery. I 've lived with a 20mm or less opening for quite a while now. But if it can slow down the disease itself-it is necessary. I'm kinda partial to my heart/lungs/eyes and other joints. They have grown on me
I guess my main question was the 2 part surgery. Most of what I have read state it is a one day. I am assuming it is to clean out the infected "funk" first.
Play the funky music!!!
I am sorry to hear that you are going through so much. I had an MRI scan done of my TMJs before I started with splint treatment. My MRI scan showed that I have Synovitis in my TMJ on both sides. Synovitis is inflammation of the Synovial fluid, but I am not sure how that differs from Rheumatoid arthritis. Do you know?
Welcome to the boards and sorry for your plight rocckyd - my father had RA and it was not easy to treat or stop in terms of progression and yes many of the drugs he tried caused other problems. I am surprised though it affected your jaw joint first however it could be that was your weakest link so to speak and more susceptible.
I was curious though - its been something I have pondered for quite some time - my muscular tmj symptoms began with a sudden change in my bite due to dental work done by a prostho - and with that came fibro pain and suspicions of MS and RA as all my body joints became stiff and inflamed - some like my thumbs can't even bend anymore- and my muscles throughout the body lost their strength and began to dysfunction - with my dad having a history of RA I could see why medical drs immediately thought this was a possibility. but it occured to me my dad's RA started within 6 months of him losing his teeth and going to dentures - a very definite change in bite - so I have often wondered if that did not kick off the RA. I was wondering if prior to the onset of your RA did you have much dental work done or undergo any extensive work affecting your teeth and jaws or something with the neck like whiplash?
I guess I am wondering if there is a link or relationship between how the jaw and bite interact with the c-spine and brain stem and if this can affect the central nervous and neuromusuclar systems and in essence is somehow responsible for the deterioration of the auto-immune system leading to the possible onset of RA if not other conditions as well.
Synovitis can be a symptom, but it can be a symptom of other things as well. If you are not having any other symptoms, I wouldn't be too concerned. But, I'm not a dr What did your dr say?
Thelma-Louise: :I was diagnosed as a teen. Can't seem to find a trigger. I ran fevers of 102-103 for a number of days and had a constant rash. Then I woke up one morning and couldn't get out of bed. Rest is history... My diagnosis is actually Juvenile Rheumatoid Arthritis. It doesn't change the treatment, just explains the eye and heart involvement. JRA is also known to attack the jaw. I was diagnosed inbetween the classifications. JRA is normally used for 16yrs and younger. I was 18/19 so dr initially said RA. Duke changed the classification after running additional tests. It's just all in the wording...
Just thought of something...does your dad also have sjorgren's syndrome? It often pairs up with RA. Basically it's inflammation of the tear ducts and causes extremely dry mouth. It does affect organs as well(it was a diagnosis on HOUSE), but for most it really affects the eye/mouth. Don't know if that could have something to do with your dad's teeth. He would know if he has this cause a biopsy is used for diagnosis. I use special toothpaste/mouthwash and have had the ducts plugged in my eyes to keep in moisture.
Although my dad is no longer here he never was diagnosed with sjorgren's syndrome - but now that you mention it, he did have a chronic tearing problem and often complained about his eyes feeling dry and was often rubbing them - which I thought was due to cataracts or glucoma - and dry mouth - he drank water like a fish and complained of having dry mouth and being thirsty - which I thought might be due to the diabetes. Eventually he developed Addisons disease and type II diabetes from chronic steroid useage (prednisone). But his onset of RA began quite like yours - almost a month where he couldn't get up and ran very high fevers - we thought it was the flu - this was 35 yrs ago so the only treatment back then was gold injections and steroids - by the time they started coming out with other drugs his joints were already deformed and we were looking into wrist, ankle and knee replacements - but were hesitant of any surgery b/c of possible complications due to the other conditions he subseqeuntly developed so we never pursued it.
I think we need more real Dr Houses' out there - man there is nothing that slips by that guy.
I wish you the best of luck with your surgery - sorry I can't be of more help to you but mine is more a muscular tmj problem - but it sounds like you are in good hands and if I read your post correctly the first part of the surgery is to also get the correct measurements for the replacement joints as they are custom made, correct? Have you thought about contacting the mftr of the tmj concepts and speaking directly to someone there - I believe one member here did that and it helped greatly to calm her fears and concerns.
Because your TMJ is the result of a medical condition, it should/ will be covered under whatever medical insurance you have. There is an excellent doctor at Massachusetts General who is currently teaching at Harvard and ranks among the top docs in the country for TMJ that practices there. PM me and I will give you his name.
Treating TMJ is a can-of-worms with so many different specialties staking claim to it. TMJ is a catch all diagnosis with so many root causes, it is hard to know where to start. I personally feel it is always good to start with an Oral Maxillofacial Surgeon that is a part of a teaching facility. They will run all of the tests necessary and accurately diagnose what is going on. You can make any treatment decisions from there.
Another thing to consider is that with so many specialties treating TMJ, it is likely we will find the answers we are looking for by simply switching to a different specialty… but that does not mean the new doctor is right. For example, a dentist may recommend splint therapy, an orthodontist_ braces, a neuromuscular dentist_ long-term therapies that can include muscles, bone and bite…. It takes little more than a weekend course to call your self an expert and treat the disease. Now let’s say you go to the dentist and he recommends splint therapy. Why does he feel this is the appropriate course of action? Of the hundreds of splint designs on the market today, how many does he work with in his practice routinely? Why is this one the right solution for you? The TMJ was coined the money joint for a reason. Educate yourself. Be aware and involved in any/ all treatment decisions.
Although the TMJ is a ball and socket joint by design, it differs from others in the human body given it is enclosed by the temporal and mandibular bones on either side, making it a continuous system. What happens to one side, affects the other… and you cannot say that for an elbow or a knee. Additionally, relative to its size the TMJ takes the greatest load in the human body. Swallowing alone exerts 50 lbs. of pressure on the condyle. If you are considering a TJR (total joint replacement), there are several things you need to understand.
1. Prosthesis systems do not last forever. Do your homework regarding the prosthetic system your doctor uses and ask questions.
a. Are you allergic to cheap jewelry?
If you are, make sure you are patch tested for the materials used in the creation of the device. Most devices are created from a combination of cobalt-chromium-molybdenum (co-cr-mo), titanium (ti) along and an alloplastic material called ultra high molecular weight polyethylene (UHMWP).
If it is necessary to move ahead using a solid titanium joint, please be aware that using a harder material is not ideal in this case and can reduce the life expectancy of the joint up to 40%, as they are more likely to fracture.
2. There is a magic number for all open joint orthopedic procedures before they expect patients not to recover 100%. That number is five (5) to one specific joint (not total surgeries). Remember it!
3. There are no FDA approved synthetic disc-replacement options on the market. Many surgeons still use Silicone HP Sheeting/ Silastic off-label. It was banned for use in all load-bearing joints in 1993. Conservatively estimated, over 11% of patients reacted to this Silastic/ silicone and it does not show up for years! If you are considering disc replacement surgery, talk to your doctor about what auto-genus donation procedures available. Understand the success rates, your condition and talk to patients that have had it done.
4. There are three FDA approved prosthesis systems on the market today, and one pending approval. Understand that doctors typically only use one device in their practice.
a. TMJ Concepts_ Custom prosthesis system hand wrought from a solid piece of metal to fit your specific anatomy. Fossa is composed of UHMWP.
b. TMJ, Inc.; Christiansen_ Stock, cast all-metal prosthesis system.
c. Biomet/ Lorenz_ Stock, cast prosthesis system with a titanium powder plasma coating on the condyle. Fossa is composed of UHMWP.
d. Hoffman Pappas_ Clinical trials/ Custom, cast prosthesis system with a titanium-nitride coating. The fossa is composed of UHMWP. What makes this system so different is that the condyle alone can easily be replaced in the field when it wears out using a special tool. There is no additional drilling of the bone and recovery is hoped to be easier on the patient (there is no clinical data yet). Medical Lego… what an awesome idea! Again, this system is not yet FDA approved.
I understand that surgery can be necessary. I’ve been there and seen more than you can imagine. Please don’t jump into something like this based on pain alone, because surgery is ONLY geared to restore function. This hurts. I completely understand. Back when everything happened with me, there was no internet for me research or forums to ask questions. Doctors had the answers… and we didn’t question things. Educating yourself is so important. Be aware… Be Present and Be Proactive!
Date for stage 1 has been set for March 30th. Obviously not looking forward to it, but the timing is perfect. I teach, and this will allow me to use Spring Break for recovery. Then, back to the kiddies...
The surgeon call today and let me know that he had talked to one of his patients today. He is in his early 20's and also suffers from JRA. He is willing to talk to me about the surgery if I am interested. He is in a very similar situation, so I'll think about it. He has offered me other contacts, but they have not had the same health issues going into it.
So...no takers on the two part surgery huh??? Maybe I am a trendsetter!
Synergy! Thank YOU! I will wait on the surgery option. My God I am allergic to cheap jewelry allright! AND sometimes I even have a problem with gold! (14kt)
I am using my mouth guard at night. For me, it really helps relax my jaw. I fell asleep watching tv last night and totally forgot it. Between my jaw being all out of whack and my freaking eye feeling so dry despite my night ointment, I woke really CRANKY this morning. ALL that got me through was me trying to remember that with ALL the problems that I have, there are still others hurting worse than I, I am sure.
I live in an elderly disabled housing and when I see someone in their wheelchair I feel SO grateful that I can get around, even IF it is with extreme pain!
I am kinda down today over everything. Chronic pain just wears the hec out of us!
This information you gave was critical and again, THANK YOU!!!!!
Breathe… Today is just a day and tomorrow will not be the same as today! I do understand how exhausting the pain can be and the toll it takes on our lives; but we’re here and have an opportunity to share and give back to each other… and that’s something.
Don’t look at it as a day… break it down into hours and make a game of it. Pick up a crossword puzzle. Play Scrabble on line. Write a letter to someone you have been thinking about. Do whatever you can to try to distract yourself from being the primary focus. I know what I am suggesting is not easy but you will be glad you did. We all have times in our lives when we feel like “Alice” standing on the edge so afraid to slip and fall flat on our back looking up at the world and wondering… ”what now”? The trick is in understanding that the whys and what ifs of our condition are just a brain drain that does nothing more than push us closer to the edge.
Comparing yourself to another person that you feel is suffering more than you are is not fair to you. The operative words there being, “you feel”. How do you know what they are feeling? Because they are in a wheelchair and you are not, their pain is more real than what you are experiencing. You cannot beat yourself up like this. You hurt. It is a fact… nothing more. Give yourself permission to feel!
I hope your day gets better and that tomorrow is better yet.
Just wanted to let you know that I had "stage 1" completed on March 30. The surgeon went in, removed the diseased areas and part of the condyle on each side. Silicone implants were then placed and measurements taken for the titanium joints. I then had a CT scan the next morning for more info.
The dr. had planned on me staying for 3 nights, but the 2nd day a woman was placed in my room with an unidentifed infection. My surgeon literally flipped...I take chemo meds for the RA. So, I was released to the hotel that my best friend was staying in during the surgery. He stopped by and saw me in the morning/evening and called during the day. Needless to say, I would much rather be in an hotel rather than the hospital. So, surgey on Monday, back home Saturday-not too bad.
I have read a copy of the OR report. I have so many drs that it is easier if I get the copy and take them to my appts. Plus, I teach biology so this stuff is fascinating to me. It does make me feel better that my rheumatologist-after reading the report-assured me that this had to happen. The surgeon said the same thing, but I would expect that. The RA causes my immune system to go crazy. For whatever reason, the disease was causing the bones to fuse-bony ankylosis for those that know the med terms or have this issue as well. I was surprised to hear this and had been expecting a diagnosis of fibrous anyklosis. There was also extensive joint damage and fluid. The pathology of the fluid came back as RA so at least there is not another cause. While I was there for a recheck I met a patient who was there. He also had bony ankylosis. Here is the scary part-he was homeless and had been bounced around the system. By the time he had been referred to the surgeon, his opening was 1mm...that's right-1mm! He has a trach due to breathing issues.
So...stage 2 is scheduled for June 14th. This is when they will place the custom made joints. I am on a soft diet until then. I went back to work 2 weeks after surgery and the kids have been great. I look like a cabbage patch kid on steriods and I have problems with some sounds(sh, th..) Obviously it hurts, but it doesn't hurt any worse than it did before. The whole point of this is purely for function. My opening would have only decreased more and more as the bones continued to fuse, so the prospect of saving function is enough for me. I am also used to hurting-haven't had a painfree day since the Ra found me as a kid. As you guys know, our tolerance for pain increases as time goes by.
So, now it is just a waiting game until stage 2. RA wise, things aren't good. Pick a joint, any joint...they are all swollen. I am in glasses as even my eyes are inflammed. I have a CT test and breathing function test next week to check out the lungs. But, no med changes until after I have healed from stage 2. Like I mentioned, they are low dose chemo meds, so the surgeon and the rheumy don't want to wipe out my immune system while healing. Obviously, I understand the reasoning, but I know it will be a hard few months. Luckily, the school year is just about over.
hi rocckyd . . . just thinking about you and wanted you to know. Your sense of humor mixed with pragmatism and of course your 'wonder team' is amazing and has helped you move through your serious medical issues. You are one lucky teacher to have the students support you, you are certainly a role model for them. Thanks for sharing so much of yourself and your travels down this road of RA it has certainly helped me in more ways than one.I hope your day is going as well as can and you continue to keep us posted. Where did you say the surgery took place?
The FIRST set of TMJ Concepts I had put in was a two surgey deal. My OS went in "cleaned out" what was left of my left jaw joint and removed the remaining bone ect in my right joint, that surgery was done in May 2003 and the TMJ Concept bi-lateral surgery was September 2003, a few days short of four months.
No I have been a Shands (Gainesville, Fl) patient since Nov. 1997. Fingers crossed.. this last set of TMJ Concepts seem to have worked. The surgery only lasted eight hours flat this time, I went home 26 hours after surgery, the OS unwired me nine days after surgery and five months after surgery I had my first steak in too many years to count! My pain is around a one or two now and I can open to 31mm. The wonderful people at TMJ Concepts did this set of implants a little differant this go around, along with the 3D CT SCAN they asked for a few pictures of my face before TMJ came in to my life and took over. My understanding is they scanned in the pictures and layed them over the 3D CT to see how my face should look and adjusted the implants to match. Per my OS the implants went right in, no adjustments, it was as if they were made for me! HAHA! And I can tell you with the other two sets I always had the feeling that the implants were there, like maybe they were too heavy...I really can not explain it other than I knew they were there. With this set...I have forgotten they are even there. I had a friend ask me when I was having surgery and I asked for what and she she said I thought you were having jaw surgery again..I had to think..I totaly forgot I had the surgery in August! I will be nine months post-op May 19th and am not getting to excited until after I reach my one year mark in August. Every surgery is differant but this last one was unlike anything I had ever experianced and I am enjoying every day as much as I can in case the pain does come back. More than ANYTHING I really am enjoying being able to hug and kiss my husband, children and grandbabies with out causing myself pain and distress! Take Care!