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Who is TMJ Hope?

I thought it was time that I formally introduce myself. I’m sure that you’ve all wondered… who is TMJ Hope? What follows is part of the story of how TMJ Hope came into existence. I hope over the next few months, together we can turn TMJ Hope into what so many of us have always dreamed of, looked for, and been unable to find…a place you can count on for support, information, and understanding. While there may not be concrete answers and treatments for TMJ disorder yet, there is always hope.
My experience with TMJ disorder began years ago at the age of 12, when I was attacked by a neighbors dog. This resulted in hundreds of stitches in my face and neck. At the time, the damage to my jaw was not apparent and certainly not investigated. The only symptom I had were drop to the ground headaches. The doctors believed they were caused by PTSD (which certainly would have been understandable, but we felt they were from something different). Five years later, the symptoms started to change into more migraine type headaches and jaw pain.
I did rounds with my primary care physician, neurologists, orthodontists, oral surgeons, “facial pain specialists”, physical therapists — you get the picture. Next up was splint therapy — I had an anterior repositioning splint, NTI, soft splint, hard, bottom, top, Mora, Gelb, etc, etc. Other treatments I tried included physical therapy, trigger point injections in the face and mouth, prolotherapy, occlusal adjustment, massage, medications, TENS units, and more splints. New doctor meant a new splint. Any relief of symptoms was unfortunately, temporary.
During all this my symptoms not only escalated, but they changed. I was now having daily migraines, and on a no chew diet. The pain severely impacted my day-to-day life.
An MRI showed interior disc displacement on the left side. The doctor agreed that left TMJ arthrocentesis was necessary. Afterwards, I felt worse and my jaw locked again. I was then fired as a patient because as an oral surgeon he “did not treat pain.”
My next surgeon reread the MRI and found that I actually had bilateral disc displacement without reduction on both sides. The next surgery was a bilateral disc suturing (an open joint arthroplasty). I had a great surgeon and fantastic support from my family, but I had no idea what I was in for. As a computer geek I did my best to research what was out there, but I wasn’t happy with what I could find. Where was the support? I wanted someone to talk to before & throughout the surgery, but it just wasn’t out there. I heard from many other patients, who were looking for the same. They urged me to create something.

That surgery unfortunately didn’t help. We were discovering that my case was totally out of the ordinary. What followed were six more surgeries, and each time my surgeon went in my joint it was fused together (bilateral TMJ ankylosis). My opening at its smallest was less than 5 mm. I knew I should not continue having surgeries, however my options were extremely limited — I couldn’t open my mouth, I couldn’t eat, and I couldn’t brush my teeth properly… Not because of pain, though it was excruciating, but because my jaw joints had literally fused into one piece. I was stuck between the proverbial rock and a hard place…. do I continue having surgeries that only help temporarily or…?
I remember the exact time and the view from the doctor’s exam chair when my surgeon said he could not help me anymore. He said he was truly sorry, and I could see in his eyes that this was the absolute last thing he wanted to tell me. He felt that the only option left was referral to a different surgeon……. for bilateral TMJ total joint replacement. I guess I must have tuned him out because I went home, packed my bags, and moved to Austin, Texas. You know — new venue — new life….Leave the excess baggage and jaw problems behind, right? I woke up one morning several months later with my jaw swollen and almost no opening. The pain was over the top yet again… So —
I packed my bags and moved back home to begin the process of finding not just any surgeon, but the best surgeon. I told myself that this surgeon was not doing my total joint replacements, but I Custom TMJ Total Joint Replacementswould just check out my options. After interviewing several surgeons, I found “the one.” He just happened to be 2000 miles away. So, yet again…I packed my bags (and my mom’s bags), and we were off to Chicago. My fused joints were removed, and my jaw was wired shut. Then the wait began, and 10 weeks later… We packed our bags and returned to Chicago again.
The wires were finally removed and I got my new custom titanium jaw joints. The next morning my mom brought me the best grilled cheese I’ve ever eaten (I can literally see it in my head right now in all its greasy glory)! After being wired shut for so long, I must say that it made my tongue very happy! Then, I got up, got dressed, and walked out of the ICU for the second time in 3 months.
I wish I could say that I lived happily ever after, but that is not the case. There were a couple things that I didn’t really think about much prior to the joint replacement, even though I felt that my expectations going into it were very realistic. Now that I don’t have natural joints, no matter what happens, I can never get them back. I will forever be reliant on medical science. To think that this all started when a neighbor’s dog attacked me and threw my face back and forth in his mouth….. wow.
What I have come to realize is that maybe there are other plans for me. I no longer spend a lot of time being concerned about things I can’t change. I don’t wait for the other shoe to drop. I’m not good at proper nutrition… I don’t sleep when I should…. I drink too much coffee, and have problems with schedules. But… this is my life and for the first time in years, I am actually living it! The times I feel the best are when I spend my energy helping others. I remember how I felt when I couldn’t find the information and support I needed years ago…
And that, my friends, is why we are here today…
. Welcome to TMJ Hope!


TMJ Hope has been created for you. A place to learn, to share, and to meet others who truly understand what you are going through. As long as we are in this together, there will be hope.

20 thoughts on “Who is TMJ Hope?”

  1. Its great to know others are out there. Mine started from falling down the stairs when i was 3 and hitting my jaw badly. However, at that time they did not investigate further so i had no idea my jaw joints had been damaged.
    It was when i was 12 i seeked help as my joints kept locking shut and cracking loudly for others to hear ( i thought this was normal as i had grown up with it until some one pointed out to me it wasn’t).
    So between the ages of 12 and 19 I had several surgeries to both sides including disc repositioning, taking bits of bone out to wash outs. In addition, conservative treatment with muscle relaxants, medications etc.
    When i got to 19 i had regained my jaw function but with some clicking to one side but i can live with that. I had flare ups and suffer badly from migranes but never really seeked further help throughout most of my twenties.
    Then I had a Road traffic accident and in 2007 which has set it all off again. ALthough i started to feel numbness in my face before the accident and had a feeling that something was not right. What ever the case, i had more wash outs done which had no benifit. Then the consultant i was under admitted i needed to see a specilist.
    They then done a MRI which showed that both sides have internal derangement with the cartilidge sitting out of place with significant degeration. I also have arthritis in both sides and cysts. However, I am only in pain with one side at the moment and it has been decided for me to undergo a total joint replacement to the one side.
    I may need it on the other side but my surgeon said there is no point taking it out if it is not bothering me.
    So i am just awaiting my implants to be made and i shall be going in for the operation with the next few months. However, i fully expect to be having the other side done later on.
    I went through my teens feeling i was the only person to suffer form this and it such a support to know others are going through it to. SO i truely thank you for this website and keep up the good work.
    xx

  2. WOW you have been through a lot. I have not had that much problems.
    I have had a clicking in my jaw as long as I can remember then it was getting worse about 7 years ago and so I was checking out what I could do about it. I have already been through several splints by this time so I was ready to go to the next step. I was sent to an oral surgeon and he gave me a cortizone shot in the left joint, which was the weirdest thing ever, but it helped a little. Then I developed a bone spur in that joint and had to have my fossa removed and they put in a metal one.
    That was ok for the past 6 years but really bothered me when stormy weather hit. Finally end of last year I was in a lot pain, went to a new Oral surgeon (the old one was sued and loss a 14million judgement)and he asked a bunch of questions and ran a bunch of test and desided that my new metal fossa was failing. It was pulling away from the bone, so I held off as long as I could and then had it removed last June. So far my jaw still is in pain but not as bad. I am thinking I will always have some pain, and as long as it is livable I will be fine. The only thing is that the surgery they did, removing 1/2 of my jaw joint, has not been done very much so we are not sure how long I can last. The surgeon says that he will keep an eye on it and the next step would be a whole joint replacement. But the is just for the left side so not sure how that all works. If anyone has gone through this let me know your thoughts.

  3. Everyone with TMJ has a story to tell and yours is particularly heart-wrenching. Coming to terms with the condition is always a challenge. I think you are on the right path.

  4. Hey Stacy, I have been trying to find you so this has been great!!!!!!
    I don’t know where to start with my story…….
    I have been through it all, the splints, the braces, all the surgeries and now I am waiting for my second total joint replacement. Well, the third if you count the rib graft. ( Two of my ribs were removed and shaped to take the place of my condyles.) That did not work either. The pain has been horrible and never ending and seems as if there is no end in sight. I really have no high hopes for the new joints since the last ones failed, but I won’t give up completly. It is just frustrating. I had my last joints removed in Dec of 09, so it has been weird not having them for this long. I thought that the pain woilr go away when they were removed, but not at all. My local ER has gotten to know me to well. Better than they would like anyways.
    I am taking morphine twice a day, vicodin for break through pain, Lyrica, Soma, Naproxen, Lyrica and a whole mess load of anti depressants. Yippeeeee. My pharmacist loves me.
    It has been hard because I don’t have anyone to talk t about this so I am so happy thatthis site is up and running! Thank you for all that you do.

  5. Thanks Stacy for sharing your story!!! I am absolutely amazed to hear what all you have been through. We’re all a mess from TMJ in many different ways…. thanks for giving us all a “home” 🙂

  6. Thank you all for your comments!
    Mary – Thanks so much for stopping by! I look forward to getting to know you.
    Elaine – when do you think you will be having your surgery? Please keep us updated as to how you are doing! In fact, if you are interested we are always looking for patients to journal their experiences. Shoot me an email if you’re interested (the contact us page is here: http://www.tmjhope.org/about/contact-us/).
    Liz – I had both sides, so I’m not sure what it’s like to just do one. I’ll be keeping an eye out for anyone who is in your boat though! (speaking of which, Elaine, the comment above you is having one side done! How crazy to find two of you at the same time!)
    Dale – thank you for your comment. You’re right.. there are so many TMJ patients, every single one wanting to tell their story, to vent, and to be heard. After many years of feeling alone, it is so important that they have a place to feel understood.
    Melisa – Glad you found us!! I’m so sorry to hear that you aren’t doing well. I hope that your pain gets better soon. When will your next set of joints go in?
    Jessica – thanks for your comment!! You’re welcome – I feel very privileged to give all of you a home!! 🙂
    As always, let me know if I can help you all in any way. I hope you will stop by often to say hello, update on how you are doing, give any tips you can think of, and let me know if you have any ideas or suggestions.

  7. I am waiting for the joints to be made. The company that my doctor used went bankrupt so he he is having to use another one and has to take a class first. He said he would try to have them rushed but no promises as he does not know how the new company works. I would be suprised if it happens in the next 6 months. I think it will be after. If not I will just be happily suprised!!!! If someone could just have a talk with all of this pain and explain to it that we have a while to wait and I would really appreciate it if it would let up on the nausea, I would really appreciate it! thanks

  8. Hi Stacey,
    Surgery is looking to be around end of September/October time but no comfirmed date as yet. Reason being the hospital likes to wait for the implants to be made before making a date.
    I would love to be involved in your journal and certainly if it helps others then great.
    I will email you about it.
    Liz apparently it doesn’t make any difference if you have one side or 2 done. It comes down to what joints are causing you pain and problems. All surgeons are different to how they treat and some prefer to do the 2 at the same time but i tend to have the thought if it doesnt hurt, then leave it alone. Even if it means i have to go in in future to have it replaced, then so be it.
    ps. sorry for all the spelling mistakes in my last post (blame it on the medications, lol)
    xxx

  9. I had bilateral jaw joint reconstruction after many years of TMJ pain. I have very little opening and chewing anything was EXTREMELY painful. Glad i had the surgery. Everything went well and I have a much wider opening nearly no pain chewing. When opening my mouth wide it just feels like tight muscles being pulled a bit, but not painful. My life has changed for the better…..and yes, I got fatter! I eat anything and everything now but really do make sure that I don’t over do it.

  10. I have been looking All over to be able to talk to someone that really understands…unless you have been there there is truely no understanding..This has been going on for about 15 yrs for me. I was attacked by dog and got lock jaw. Well 4 sergerys later. I am still suffering and unable to work. I am not able to even go outside amd enjoy the sunshine. Any kind of light causes migraines. when I say that any emotion weather it be laughing, crying and stress lays me down. Then the talking and eating is just added to those. I have never been able to talk to ANYONE about the TMJ because they just don’t get it. I have lost sooo much time and missed out on sooo much with my family. Thank Goodness there is someone that really understands..Kim

  11. Kim,
    Are you getting any treatment for it??? Its great to have a website like this, suddenly you dont feel alone!! Also, great to hear encouraging stories rather than the doom and gloom posted all over the net. You always hear about the horror stories but no one ever seems to tell the good ones (except from this site which is full of positivity…..thanks stacy!!)
    Take care xx

  12. Thanks for sharing! I am going back in for surgery Sept 24th. I am a bone grower and it is growing in all directions. I will be doing radiation 2 days after surgery for 5 days to help retard the bone from growing. I have a 50% chance of success w/ that. I am very optimistic!!

  13. I truly love knowing others feel the same as I do. It’s like a comforting, warm coverlet with all of us sharing our grief & pain. I’ve suffered along with all of you for 19 years while going through so many trials. Some would work for a while, some would not. The final answer was bilateral total joint replacements in March. The surgeon had to go back in & re-do my left side because my bite was off 1/2 inch. Even now I only have 2 teeth on the right side that touch so that is where I chew everything. I’m developing several knots under those teeth so we’re wondering if that is coming from so much pressure as I chew. I had so many problems after the surgeries: reactions to meds so there was an extreme amount of swelling (& pain, as you all know)with an ambulance ride to the ER when we thought I would totally stop breathing because of swelling over my entire body. The EMT’s were really funny when they saw me…their faces showed such shock & amazement! After the 2nd surgery I had pain from my neck up & over my head so excruciating I actually considered suicide. Only my loving, supporting husband kept me from that. After 2 weeks he took me to my neurolgist who immediately admitted me to the hospital. The MRI on the next day showed a subdural hematoma (no one knows where that came from…happened after the 2nd surgery). I was very blessed to be alive after all. The next week was spent being kept highly sedated & observed 24/7 with no movement at all until the pain was partially under control.
    I am now in PT, speech therapy, massage therapy, & accupuncture for muscle spasms in my upper back & neck. Thank you all very much for listening to my whining & please know that you’re always in my prayers & thoughts. It’s really a shock that so many people come up to me to discuss TMJ because they feel they too have TMJ on some level. Bless you Stacy & all who read this.

  14. I just recieved a certified letter from my insurance company denying coverage for the new implants. There reason is that “I asked for the last ones to be taken out” which is a bunch of crap. I cannot live the rest of my life without my TMJ joints. I am in so much pain without them right now it is not even funny. I don’t understand insurance. I did not think that this was going to be an issue. Now I am scared to death that I am going to be stuck like this forever, and that I WILL not do. I have been on the brink of suicide before, and I will get there again very easily. I have to fight this. Of course it happens on a Saturday when I cannot do anything…..

  15. I am so on the edge with all of this pain right now. not sure how long I can handle this. I was supposed to start pain managment, but the place that I was going to only does injection therepy, and I will not do that again. I did it once, they stuck a huge needle in the base of my skull, it hurt like hell, and did not help. Not going there again. The only other place I could go only takes one of my insurances which leaves me to pay a $35 copay every time I go in there and I cannot afford that. I told them I wold only be able to come once a month, and she told me that would not be enough. So I sit and I wait for a miracle. That either all of this pain medication tht I have been taking actually starts to work, or that I get run over by a bus. I really see neither happening, and I am at a loss of what to do. I thought I was a seasoned pro at this, but when the pain turns around and strikes you with a vengence, you kind of turn into a little baby again. Doesn’t matter how much you have been through, it will still bring you to your knees at some points.
    Anyone have any ideas?

  16. Hi Melisa,
    I am so sorry to hear that you are having trouble with the insurance company, are you going to appeal???
    Regards to pain management, obvisouly you are taken pain killers, anti depressants (nerve pain) etc but have you tried a tens machine to relieve the muscle tension or even massage. I am with you on the pain side of things, it just debilatates you. I was thinking of buying a tens machine myself but not sure it will help. Ultimately, its the joint that needs sorting but its managing it inbetween. Hope you get something sorted.

  17. I have been fighting my insurance company for years. They tell me its still under investigation. Serveral years ago I finnally found a doctor that went in and did the Botox injections on the inside. I had my joints removed about 12 years ago and never got any relieve after 4 surgerys. Until I found that one doctor. Of course I had to pay $1200 up front for the Botox. Now the cost is $2000. I pay almost $800 a month for insurance and they are not will to help with the Botox?? I have gone into soooo much debt looking high and low for relieve. Can’t believe I have finally found some one else that is suffering from the same thing. Unless a person has it they have NO idea. Thanks Kim

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