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  • Is surgery really my last hope?

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    Old 10-24-2016, 02:08 PM   #1
    FreeMe14
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    Is surgery really my last hope?

    Hi all, just a fellow TMJ/TMD sufferer living in Denver, Colorado, trying to navigate the confusing waters of getting help when no know seems to actually know anything. I have to be honest, after reading some of the stories on here, I feel bad even complaining about my situation, but I need advise. Here's my story....

    I've been dealing with TMD for about 3 years now. For a long time, every new doctor told me they could "cure" my TMJ.....I stopped believing that a while back after many failed procedures. I first found out I had a problem, like many, after going to an ENT with sharp pain in my left ear. There was no trauma, no answer to explain why I started having this pain. I've been a teeth grinder my entire life, I can remember my cousins waking me up when I was a kid saying that it sounds like I was chewing on nails....but I also did that for 26 years without any issues with pain.

    I didn't take any action after finding out about the TMJ (which I now wish I had!), until meeting another girl that had been seeing a dentist in my area for TMJ as well. This dentist told me I was a perfect candidate for equillibration and that it should fix the problem with a few sessions of using a TENSing system to find my "correct" bite, then adjusting my teeth to fit together as such. This did make the swooshing noise I'd developed in my ear go away, but it actually left my jaw feeling very confused about what my bite actually way. I also had a night guard made by this dentist, which never did anything.

    After this failure, I decided to start thinking a little more alternatively. I've had really bad pain in my right shoulder blade area since before the jaw pain began.....I started to think that maybe it was all related, so I found a chiropractor. He said he'd have me all better within 3 months! I started seeing him twice a week, never with any relief, so I also started seeing a osteopathic doctor once a week in conjunction. When I still wasn't getting relief, I added in an acupuncturist. At the end of the 3 months, nothing had changed, so I stopped seeing the chiropractor and decided to consult with a different osteopath and began doing physical therapy. Finally, someone that wanted to figure out the WHY of my pain. He ordered X-rays and an MRI (of course, my insurance denied the MRI.) When the X-ray came back with my bones looking weak, he became concerned about osteoporosis.

    The next chapter begins. From the look of my bones on the X-rays, we were able to get my insurance to approve a DEXA scan. The doctor asked me to stop the physical therapy until those results came back. Thankfully, I don't have osteoporosis, but the results did show osteopena (the beginnings of osteoporosis). I started to feel hopeful again, that at least I was getting some sort of answers. He recommended me to a TMJ specialist that he said should be able to order an MRI. This took forever to get approval of, as the insurance still said there was not enough "proof" that I had tried to deal with the TMJ.

    While waiting to get the MRI, I began a muti-session procedure to push antiseptic and steroids into the joint, without having to do injections. I also had a new splint made that only went on my front teeth, instead of the back teeth. I can't remember the name of the processes with the steroids, but it felt like it only made things worse, as did the splint. After I finally got the MRI results back, the severity of things really sunk in. It showed both discs breaking down and out of place, some arthritic changes to my right TMJ, and severe osteoarthritic changes to my left jaw joint, including a lovely point in my bone that it constantly stabbing me (that explains a lot)!

    At this point, the dentist told me I'd tried all of the more conservative approaches and that he believed surgery would be my only hope, so he sent me off with a referral to 2 surgeons.

    .......this brings me to where I am now. Surgery was never going to be an option for me, early on, I did a lot of read about how unsuccessful surgery was for TMJ. After seeing how terrible my bone looked though, I started to think, what else would work? The bone is deteriorating and will just continue to do so if I DON'T have surgery. I don't know what to do. I'm in pain all of the time, though I RARELY take pain killers. I have tried all sorts of muscle relaxers though, believing that my muscle tension have something to do with the pain...also to no avail. I definitely have a problem with clenching, I am very cognizant of it when I am awake, but I wake up every morning in so much pain. I know I'm still grinding as well, my boyfriend finally noticed (he's usually a very heavy sleeper). I think it must be related to stress, because I had very low pain levels while in Europe for 2 weeks, but I don't feel like I lead a stressful life. I have a job I love, I don't work on deadlines, I have a lot of love and support around me, I really have nothing to stress about...other than this damn TMJ.

    So, the question becomes, to get surgery, or to not get surgery? If I don't know why I developed TMD in the first place, won't I end up in the same place eventually? The biggest fear, what if it makes things worse? Another fear, if I don't, won't my jaw just continue to get worse? Which surgery is right? (At this point, I've only been able to get into one of the surgeons for a consultation, who said we could do an arthroscopy, but that he doubted it would help the left, my more painful side, at all. He's real recommendation was jaw joint replacement surgery on the left joint). Is there another option out there I just haven't thought of? I am going to try rolfing, but the consensus at this point seems to be that nothing is really going to help because of the deterioration in the joint.

    I'm willing to do whatever, I am willing to travel wherever within the US, I just want to not think about this every other second anymore! I'm only 29, I still have so much life to live...I do not want to live it this way. I would greatly appreciate any advice. Thank you all.

     
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    Old 11-18-2016, 08:25 PM   #2
    MerrillCat
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    Re: Is surgery really my last hope?

    Something to think about...from what I understand, one should not get joint replacement to see if it helps with pain, but with using it as a means to survive giving you a certain amount of opening so that you can eat. Ask the doc you saw if the surgery would take away your pain, as he may not be able to promise that, depending on if you have nerve, skeletal or muscle issues as well. Because so many people back in the 80's had joint replacement for basic tmj, it seems to have left people with little knowledge of who to see and deal with something so painful as what you are going through. I am so so so sorry you have so much pain. Get second and third opinions and educate yourself for sure. I am not saying that a joint replacement is bad, but once you do it, you can't take it back and the tmj is hard to replicate as it is a glide, ball & socket and hinge joint, and the replacement joints cannot replicate what we once had. Wish we could fast forward 100 years.

     
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    Old 11-18-2016, 09:05 PM   #3
    FreeMe14
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    Re: Is surgery really my last hope?

    Boy, so do I! Thank you so much for your reply. I had not thought about it not helping with the pain. From what I understand, based off of what I've been told, it will...because currently, my joint is jagged and stabbing me. The last surgeon I met with made me feel a lot beget about it. I had him reach out to a few other surgeons as well. So far, everyone is saying I need the surgery or, most likely, the right side will get bad too from over compensating for the left side.

    Last edited by mod85; 11-19-2016 at 01:31 AM.

     
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    Old 11-19-2016, 03:03 PM   #4
    MerrillCat
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    Re: Is surgery really my last hope?

    I am new to this, so the quick reply seems like it should say "long reply"!! So much to say, but having a rough pain day with joints, and am going to lie down and will totally get back to this. I have "bird beaking' osteophytes and am "bone on bone" on both joints. Back a few years, one oral surgeon (local) said joint replacements are not that difficult to do and went on to say how you "just cut off this and screw this on to that". However, the oral surgeon that I see (a five hour drive) says it is complicated and you get molds done before, etc. and she went on to describe in more detail. My primary doc has told me that those of us with internal derangement of the ant. discs develop "pseudo" discs, or scar tissue that helps with where the discs use to be, but I am not so sure exactly how much truth there is to that. The big deal about all of this is being able to have a jaw/mouth opening of at a certain amount. Mine is very small, but if it gets below
    a certain point, they would have to do joint replacement. I can stretch it open to about 23 mm, but I can't keep my mouth open at that for any length of time. Eating and talking are becoming more difficult. I was skinny anyway, and lost weight and muscle mass as I just can't get enough to eat. Everybody tells me to do "smoothies", but that's a whole other discussion! I have condylar resorption, so my jaw now recedes back, and I have a lisp and my face shape has changed. I no longer look like who I used to. It is an "invisible" disease and people like me hide it well as when we see people we have to talk and smile. I have had counseling to learn how to deal with the pain, and also the people in my life that do not understand. I have seen tmj physical therapists. One made me worse, but I did find two that were helpful and I have exercise I do every day. However, I have not done them lately as I am too exhausted from fighting pain every second, but know I need to get back to them. So FreeMe14, you need to work on keeping your "opening" as much as you can. I remember when I first went to physical therapy, I was so angry because I couldn't understand how they could expect me to do these exercises when I could barely open my mouth. Finally, I went to the physical therapist that made me realize this is to save my life, so I can eat and try and function. Currently, I wear a medical alert tag that says,"limited jaw opening do not force". I had to see a physical therapist before I could get the ok from him to tell me doctor that I needed an mri. That was really backwards. TMJ for many is a medical issues, NOT dental, so there is too much grey area out there and trying to get treatment is hard as one hears so many different things. I have just had another cat scan, and am not sure what my next step is for me. I plan on getting some new opinions and see my oral surgeon asap. I have researched some good names and hope to get some new help and continue to educate myself. As I said, once I realize the pain I have could be even worse after replacement, I am trying to live with this as long as possible. I have no idea where you live or if you have access to really good second opinions.What I do know is that joint replacement should be the last resort. And of course, tmj goes way way way beyond those three little letters. It is life changing, expensive and confusing. Never never give though! My hope is that docs, etc., can learn from my jaw. I just happened on to this site while researching something, and it offered me some comfort in knowing I am not alone and we can educate ourselves and others. Off to lie down, but try and think if anything happened, even a few years before you got this bad, that might have started all of this (whiplash, root canal, etc) and has anyone given you the exercises for tmj physical therapy? Oh, yes, and me, I would love to figure out how to pass legislation to get tmj the proper medical attnetion it deserves.

     
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    Old 11-29-2016, 07:42 AM   #5
    tghouse
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    Re: Is surgery really my last hope?

    I came in to work today after a long prayer in my car about another issue I have going on physically.

    I said Lord how can I be a help to someone today and the first thing that came to my mind was help others with a past problem you had and have overcome.

    So, I decided to search the TMJ forum with hopes that I could be an encouragement to someone today about my past struggle with TMJ.

    I thought at one time roughly 10-years ago that I was at a dead end. My jaw hurt me all of the time and it made me so sad that I too thought I was stuck without a cure. Then one day I researched all the doctors in my area and found a great guy in the Cleveland, Ohio area that was a specialist in taking care of treating TMJ. With prayer and hope I did seek out this doctor who went through all of the normal stuff ( splint meds etc.) after some time he told me this is all I can do for now. I said what is next...he said surgery. I said I was scared to death of it!
    I then took his advice and visited a surgeon in my area and I immediately knew he was a gift from God. He started with a couple injections and at that time they did nothing but give me a few days of freedom.

    He then ask me to go through some rounds of imaging which I agreed to. He and I sat down and he told me I can fix you. I said ok let's do this....

    When entering surgery, I had no fear whatsoever knowing that this guy was the most intense, caring individual to me and not just another number. He actually has his own Jet and was a pilot, so I knew he was pretty smart guy.

    He opened me up, I will never forget going on the table and seeing him before I went to sleep.

    Well when he opened me up he noticed that the disc was totally detached and actually down lower in my jaw. His helper ENT said you can't fix that its going to be a tough stretch to get it back in place. He stated that I promised this guy I would fix him...Now the funny stuff...he said " He stood on the table and stretched that sucker to make it fit back" he wasn't joking it was a long stretch to get tendons back in order.

    He stated that the disc looked ok and that it must have been displaced for a long time. He didn't' remove any boned other than clean the joint up a bit.

    Now post surgery...It took about 4 months to not have any symptoms whatsoever. It took regular stretching and moving it with some exercises to gain full opening. I was shocked that it eliminated all pain and TMJ Symptoms.

    Here today nearly 10-years later I am glad to say that I have not had one issue with post surgery and or any pain. Before the surgery I will say I had dizziness for 6 years and pain unimaginable.

    So, saying all of this I need to say one thing...There is hope, there is hope, there is hope.


    I hope and pray for those on here today and hope that you to can find relief as I did.


     
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    Old 11-29-2016, 10:45 AM   #6
    FreeMe14
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    Re: Is surgery really my last hope?

    Wow, this brought tears to my eyes. I have been leaning more towards getting the surgery after finding a surgeon I really like that has been very successful with joint replacement surgery....and the fact that everyone says it will just get worse if I don't do something. That being said, it is so hard to even find a story of someone that has something positive to say about surgery. I needed to hear this today, thank you. How did you go about finding the surgeon you used?

    Last edited by mod85; 11-29-2016 at 09:00 PM.

     
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    Old 12-25-2016, 10:43 PM   #7
    TMJStu
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    Re: Is surgery really my last hope?

    Hi FreeMe14, I am also suffering TMD. Really hurts me, ear pain, facial pain, neck pain,.... not functional at all, My life turned into cliff. Only people with TMD can understand this. My teeth are staightened, but my bite and jaw are totally messed up and misaligned.
    I am in Colorado too. May I share information of doctors and therapists you visited?

     
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    Old 12-25-2016, 10:50 PM   #8
    TMJStu
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    Re: Is surgery really my last hope?

    FreeMe14, don't give up hope. Surgery should be the last resort.
    I just found Dr. Clayton Chan from internet about GNM. He is in LV though.

     
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    Old 12-27-2016, 09:30 AM   #9
    FreeMe14
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    Re: Is surgery really my last hope?

    Quote:
    Originally Posted by TMJStu View Post
    Hi FreeMe14, I am also suffering TMD. Really hurts me, ear pain, facial pain, neck pain,.... not functional at all, My life turned into cliff. Only people with TMD can understand this. My teeth are staightened, but my bite and jaw are totally messed up and misaligned.
    I am in Colorado too. May I share information of doctors and therapists you visited?
    Hey there, i started with equillibration to try to get my bite to align properly. Honestly though, i wish i would have tried some more conservative first such as a physical therapist, doing jaw exercises, yoga, etc. Because i have significant bone deterioration now, there really isn't a conservative approach, but if definitely suggest these things first! I saw a Stephen Wilk (TMJ specialist) in Denver.

    My best friend and I were both suffering with TMJ, she saw a dentist (who did my equillibration) names Mark Braasch. He gave her invisiline and it actually solved get problem. The surgeon I'm now seeing is Aaron Liddell.

    I know how hard it can be to feel understood with how difficult it is to have this.

    Last edited by Moderator1; 12-27-2016 at 10:30 AM.

     
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    Old 12-29-2016, 11:24 AM   #10
    TMJStu
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    Re: Is surgery really my last hope?

    Maybe you could try different doctor?
    I have an appointment with Dr. Steve Wilk soon, and I am hesitating to go as I have the fear of things get worse and I can not afford that any more. My problem started with 4 years(almost 5 years now) ago with upper 2 teeth extraction for brace. With years of invasive treatment, teeth extraction, space close, shifting, space reopen, brace again, et.. I have had significant bone and gum loss. should be very cautious at first place and do more research.
    What I heard that about after joint surgery TMD still comes back.







    Quote:
    Originally Posted by FreeMe14 View Post
    Hey there, i started with equillibration to try to get my bite to align properly. Honestly though, i wish i would have tried some more conservative first such as a physical therapist, doing jaw exercises, yoga, etc. Because i have significant bone deterioration now, there really isn't a conservative approach, but if definitely suggest these things first! I saw a Stephen Wilk (TMJ specialist) in Denver.

    My best friend and I were both suffering with TMJ, she saw a dentist (who did my equillibration) names Mark Braasch. He gave her invisiline and it actually solved get problem. The surgeon I'm now seeing is Aaron Liddell.

    I know how hard it can be to feel understood with how difficult it is to have this.

     
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    Old 11-08-2019, 06:42 AM   #11
    SoSayWeAll
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    Re: Is surgery really my last hope?

    FreeMe14, it's been a bit since your postings here, but I am very curious if you had the surgery and how it turned out. I hope it helped you! I'm potentially looking at joint replacement myself with very similar problems.

     
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