It has been a LONG time! I am 1 year & 7 months post-op, full replacement left side.
The past 6 months have been hard. I have been suffering with some pretty bad trigeminal nerve pain. I take tegretol which does help, but I hate the way it makes me feel
I had a root canal in November which seemed to help, but now the tooth has flaired up---thinking about having it pulled?
The cold weather is not good for me.
Sorry to sound so negative, it has been a YUCKY day!
How did you guys find out about scar tissue? Wonder if this could be going on with me...
The joint is functioning well, opening is good.
Sending Happy Thoughts To All Of You!!!
I will be driving to Shands in a few hours to find out what my lump is. It comes and goes and really does not bother me except when it swells. I will be 6 months post op left TMJ Concept Fossa also tomorrow..WooHoo me! So I am feeling this check up will turn out fine. Just do not care for the drive (BLAH!) but my Daddy is making the trip with me so we will have ten hours to chat and I really do enjoy spending the time with him.
I do know a woman who has just hit eleven (yes 11) years with her TMJ Concepts. First set of TMJ Concepts and once she "FULLY" healed, try adn stop her! HAHA! I know when I had my first set of TMJ Concepts I was told they would have to be taken out in ten years and replaced and I almost fell in the floor..but according to Dave that is no longer the "standard" and it is a case by case issue so I have had many talks with my body and would really like to keep this set in, plus since they work so well I would like to keep them. Lol! Girls, your steak is on it's way! Everytime I eat it I STILL wait for the fall out from the chewing and nothing happens so far, so between really getting to eat & chew steak without having pain and swelling, still just cannot wrap my brain around it, BUT your turn is on it way and I want to hear about it! I have a list I made over ten plus years of all the food I was going to eat one day if my TMJ could ever get on the right path and now that I CAN I just do not have the desire. I find myself most days just not even wanting to chew. Sad. But after so many, many, many years of pain and suffering I think I just got use to not chewing AND for me sometimes I feel like I am tired from chewing. Has anyone else experianced that. It is like my muscles just say enough, quit. I thought maybe because I had not really used them in so many years and then all the muscle flap surgeries they were just not use to the chewing but it seems like I get boared or just tired of the same motion over and over. I do move my food from side to side per instructions of TMJ Concepts to allow both sides of the implants to take the pressure away from one side but some times I just do not feel like chewing. The stange side to that is I lost 68 pounds in the past 18 months (I was trying) and most of it was from me changing my eating habits PLUS not being on pain medication. I also use Tramadol and love it. After so many years of pain pills I like taking something when I need it and have it work. So far, when I have been in pain the Tramadol is enough. I am so scared of having to be in a pain pill cycle again. I really do not want ot go that path ever again if I can. I wonder how many of us have nerve dammage due tothe TMJ. I know that is the cause of mine. If I had not had 17 surgeries my face would not have been cut open 17 times so my Inferior Alveolar Nerve would be intact and not have so many scars on it. I have in the last 6 months regained feeling in my upper lip and gums and along the right side of my face. The left side of my face is still numb as well as my lower lip, gums and chin, BUT I am NOT in pain so I am NOT complaining! I just learned to wipe my mouth and chin with every bite I take so that none is left on my face. Has any one else noticed or should I ask have you found it hard to tell how much force you are using when eating? If I bite into a sandwich, I tend to bite too hard, I have also bit myself so I try to not use my fingers to eat anything! I am still too scared to bite into an apple or pear, so I still cut them up in to 100 parts but I am unable to judge how much force when I bite into food so I tend to squish it to the roof of my mouth because I bite too hard. Just wondering... THANKS for the info in re FDA. I have fears that if this left Fossa breaks again they (FDA) would not allow me to have a 4th one. So far, third times has been the charm! I just can not even wrap my mind around this road I have been on. PLEASE never give up and take your time healing. I REALLY HOPE ALL of you will get GREAT results from your jaw implants and REALLY HOPE this gives ALL of you a much needed rest from pain and discomfort! I will update you when I return from Shands.
The Following User Says Thank You to Shirlett For This Useful Post: taurusma (01-17-2013)
So 790 miles, twelve and a half hours later I returned home from Shands AND...drum roll.....I have broken a screw.. that was in in my left Condylar Component AND the broken part is laying on my left jaw line causing tissue inflamation and the source of my discomfort and swelling. (BLAH) I ALSO have a screw next to the broken one that is backing out SO I will be returning to the OR on Monday, March 4, 2013. I was and still am so bummed out. I NEVER EVER thought about the screws holding my implants in place. And I do not think TMJ Concepts has EVER had a broken screw until me. I feel bad that I continue to tear their implants up. So the "cause" is undetermined...could be the "stress" from my job, I do catch myself clenching during the day, could have been from the abcessed tooth I had removed November 2, 2012 that I did not know I had since I have no feeling in the lower part of my face so do not really know how long it had been there other than it was not there July 18, 2012, and/or the left Fossa surgery I had July 18th, the left TMJ Concept had to be re-positioned to insert the new left Fossa implant since it was redesigned just for me and made outside the grid to try and keep me from destroying it so the remainder of the left TMJ Concept was unscrewed and re-set in my face. I am NOT going to think about it too much because I can drive myself insane! It is what it is. It is going to be fixed. I am still not in pain and discomfort that controls my life. I am just not going to put an energy in to it. Shands will go in, make a very small cut, remove the broken screw and the loose screw and put two brand new ones in and I will come home, heal and move on with my life. It could have been worse. GOOD NEWS: my bite has NOT changed one mm since the surgery in July 2012. My opening non-stress is 44 mm and with stress is 51. I see no reason that I would need to open my mouth to 51mm to eat something so I am VERY HAPPY with the 44 mm! I am trying very hard to not let this get me down. The TMJ road just never seems to end! I am extremely Grateful to be TMJ painfree for now, I never want to go back to that again. I know it may and can happen but for now a broke screw is a minor issue for me. Protect the implants, allow my body to heal and try my best to NEVER have to live through the Horror of extreme uncontroled PAIN again in this life. My heart hurts and I want to cry for those still having to live with the PAIN and discomfort...I NEVER thought I would live to be TMJ pain free again and here I am. It is Okay to be sad, it is Okay to have pity time and ask "why me" BUT NEVER give up Hope! Surgery is NOT for everyone nor are implants, but keep pushing forward and find what works for you. Never Ever Give Up Hope! I hope everyone has the best day they can!
I am so sorry to hear about the screws letting loose! What a terrible thing to have happen, and you were doing so well! Good luck with the surgery, and you're in my thoughts and prayers for an accurate surgery and speedy recovery! Never give up, never surrender!
The following user gives a hug of support to pamo810: Shirlett (01-23-2013)
The Following User Says Thank You to pamo810 For This Useful Post: Shirlett (01-23-2013)
So for what ever reason Shands called me on the 15th of Feb and told me to check into the OR Monday morning of the 18th! They moved my surgery UP 14 days. WOW! So I was there Monday morning and went into the OR and NOW I am glad they had the "urge" to get me in sooner. More screws had come out, four more so that made 5 loose and 4 of the 5 had broke into about 4 parts and embedded in my facial tissue...no wonder I was having discomfort..DUH..so the TMJ Concept mandible was free floating inside my face. The OS removed ONLY the mandible component along with all the screws and screw parts. The reason the mandible TMJ Concepts implant came loose is because what little bone I had has grown and thickened! WooHoo my body! There was a lot of shock over the "new bone" but for now there is enough for the remaining TMJ Concept implant to be screwed into my own bone. Now the test..will by bone continue to grow and thicken and will it be strong enough to hold the remaining implant???? Only time will tell. I came out of the OR in good shape, came home that night and by the next day my face was swollen out of control. I only had to take pain medicaiton on Monday and as of today, fingers crossed have not had to take any more, I did have to start a steroid pack yesterday so this morning the swelling had began to go down. I do not know if it is the roids or time or both. The resaon per the "OS" for the extreme swelling, since the screws broke apart and embedded in tissue they had to use a cheek spreader (?) to try and strech my left side to scrape out all the metal which they did. My fingers and toes are crossed that this was my LAST SURGERY! The remaining TMJ Concepts are PERFECT! Even my new left Fossa (implanted July 18, 2012) is PERFECT! Now, I wait and see if my body will let me function with what I got! Monday there was a little pain but nothing like what I have had in the past and of coure the extreme fear that the pain was going to return and not go away, if not for the swelling having been so bad I really do not think I would have had to take the pain medication Monday night. Plus riding in the car 6 hours home after surgery might not have been one of my best ideas to date. LOL. BUT I wanted to be in my OWN bed. One day at a time. My battle with TMJ is not over but I REFUSE to be a victim. Once I fully heal then I hope the discomfort I was having before this surgery is a thing of the past. I have not had the strange pressue and shoot pain I was having but then again the mandible implant was floating freely around the left side of my face. Once again, waiting for my body to heal and try to resume my life. I hope every one is doing well. I have another food list going. I am on liquids for 6 weeks, I am not sure I will be able to stick to that and once again I am shocked at just how many food commercials are on the TV!!!! Oh my gosh! That steak is right at the top of my list! LOL! My follow up at Shands is not until March 8th so I will have more details after that visit. I hope every one has a GREAT weekend!
Since I had the TMJ surgery last March (my Ghod, almost a year!) I have been doing pretty well. Due to severe tooth decay under my crowns, and NOT having the money to go through another rebuild with implants ($40,000), I have now had all of my teeth pulled. I only have the upper interim denture, and have to raise the funds for my final dentures (got that in the works, so should be soon!) TMJ has started to hurt again, but that is predominantly because I just have gum tissue up against the upper denture. So the bite has actually decreased, and won't increase OR stabilize until I get those dentures. I do have a scheduled procedure in April to have trigger point injections into the masseters, because that's what is actually hurting the worst. I'm now taking Zanaflex as an antispasmodic/muscle relaxant, and I think that is helping way better than the Soma ever did. Because of the lack of lower teeth I'm back to soft foods - those that I can mash into the roof of my mouth). Can hardly wait for the dental issues to be resolved, the TMJ back to normal, and be able to have a rare STEAK! But it will have to wait for the final dentures and the masseter muscle injections. Overall in a good mood!
Shirlett, as you advised me, don't overdue anything and let everything heal at it's own pace. Boy, are you lucky to have a steroid pack - I never had that, and looking back, it probably would've helped with the first surgery. Keeping you in my prayers that those screws hold, and that everything STAYS normal after healing!
Tom, how are you doing? Haven't heard from you in a while.
One piece of advice - be careful when having dental work done. If it's going to be major or a long procedure, get some sedation to keep the jaw relaxed while the work is going on, and take frequent breaks. I had my teeth removed under anesthesia by Dr. Warburton, who put in my joints. I wouldn't have trusted anyone else to do the pulling. Just as I have only 1 dentist that I trust to make the dentures (the interim denture after adjustment is almost, but not quite as good, as the final dentures should be).
Have a happy weekend, all!!
Thanks Pam! Yeah I am having a HARD TIME taking my own advise! LOL! Mostly because I am not in PAIN and other than feeling tired I want to get up and go! Then when I do all my umph goes. Went to Walmart yesterday and first half of the store I was fine but by time I hit the second side/food side I was feeling it...NO ENERGY...thank goodness for teenagers...she had to push the buggie, load and unload the purchases....and I had to lay back down in bed. It was a good idea but I just have to wait until the Anesthesia gets out of my system..BLAH...some of my fear has been released, the PAIN did not and has not come back, I took two pain pills Monday on the ride home and have not taken any more since then. I am uncomfortable at times and my face is sore, but I am not in pain so I am very HAPPY! Since the surgery the strange pain that shot across my left jaw line into my chin has not returned and I am starting to think that yes the mandible free floating around inside my face might have had something to do with the pain.....so my oldest has brought the grandbabies to entertain me...haha...so they are a Great distraction then they go home! Hang in there! We are ALL a work in progress! Just look how far TMJ Treatment has come in the past 20 years and it only continues to improve. We all have each other that understand what path we are walking and thanks to the internet we are NOT WALKING ALONE! Take Care Girl that steak is on it's way!!!!
The following user gives a hug of support to Shirlett: pamo810 (02-23-2013)
The Following User Says Thank You to Shirlett For This Useful Post: pamo810 (02-23-2013)
I am so sorry to hear about the loose screw. You may recall I have had a Lefort III piece in 2005, Arthroscopic right joint in 2007, Mitek Anchor in May of 2008, Lefort 4 piece combined with lower jaw at the end of 2008, Bilateral Total Joint surgery in 2009. I had countless complications including pain and decreased ROM since 2010. I elected to see a new surgeon in Vegas and he peformed surgery on February 20th. He discovered the left prostheses was rotated with bent screws in the left condyle prostheses. The left condyle was removed and will be replaced as soon as the bone is healed. On a good note, my ROM has increased from 10mm to 40mm. My surgeon stated the left prostheses was jammed. I have to head back to Vegas in April for a post op and to see if the bone is healing. I live in Virginia so this is indeed a long way to travel to see a surgeon, but I feel I am in good hands to move my case forward. How long were you in the hospital when your prostheses were put back in? How was your recovery?
The following user gives a hug of support to Georgek04: Shirlett (04-16-2013)
The Following User Says Thank You to Georgek04 For This Useful Post: Shirlett (04-16-2013)
Im sorry to hear you have had such problems, but thankful you have found a de to help.
I have also been having terrible problems with pain since my TMJR in 2011. I have hit roadblocks in every treatment direction, another one today, and frel lost where to turn next. I just know I shouldnt been in this much pain!! I want to get off the pain meds so bad.
How did you find the new dr?
I did a bunch of research and found out that this new surgeon has corrected a number of patients who were having complications from my surgeon who did the orignial jaw surgeries and joint surgery. I am so sorry to hear you are having complications. I have had pain on the left side and decreased opening (10mm) for the past 3 years. Like you, I hit roadblocks with every procedure. Now at least I finally know what is really going on. My new surgeon is Dr. Glyman.
Hello My TJR Family!!!!!
I am still hanging in here. Returned to Shands on 3/22/13 & the screw holes had began to close up but not as much as the OS had hoped so no decision has been made to replace my left mandible and most likely will not be made until the end of May... . I am okay. Very hard to eat ANYTHING I have to chew so I am finding it hard to keep my weight up..I find this hilarious since I have been trying to get back to a healthy weight after the birth of my daughter in 1989...I continue to remind myself I have survived much worse! The OS was also VERY upfront with me about he is unsure at this time that I could under go another jaw surgery without causing MORE facial damage. My lower, left side lip had yet to regain any movement when I was there on 3/22. Over the last 2 weeks it has began moving again the only issue is I am not moving it so when it has one of its spaz attacks it freaks me out. At the check up he put me in the 90% that IF I had another jaw surgery on the left side I am at a higher risk for total loss on the left side of my face, I would look like I had a stroke. So the jaw implants would be useless on my left side. But now that my lip is starting to come around my % will go down. I have made the decision to NOT worry or apply any negative energy towards this. I have come too far to give up and I have faith in my body's ability to heal. Without going into too much detail...I have a family member who has a drug problem & the family has not been able to reach her with help & I could not understand how drugs could be chosen over kids & family BUT now I am understanding the expression chasing the high..I was PAIN FREE with Great function and would goes DAYS without even thinking about TMJ and I want that back! I NEVER THOUGHT I would live like that again and it happened and I want it back!! But I am not willing to take a chance is I am 40% or higher. I just feel I have come too far & fought too hard to just give up on myself. I just have to wait & see what the OS has to say at the end of May.
I hope everyone is doing as well as they can and PLEASE never give up!!
As of this morning ALL of my facial movement has returned!! WooHoo! The feeling has not returned BUT my eyelids & mouth are moving so that takes me out of the 90% and drops me back to normal surgical risk. I do not return to Shands till the end of May & should find out then if they are going to replace the implant parts they removed 02/18/13. Hope EVERYONE is doing as we'll as they can!!! NEVER GIVE UP HOPE!!!
That is great news Shirlett. I return back to Vegas on Monday to see how I am healing from the explant surgery. Fingers crossed all will be healed so I can move forward with putting the prostheses back in. Eating is still a challenge since my bite has sifted drastically once the prostheses was removed, but my surgeon feels he will be able to correct everything during the next surgery. Hope your healing continues to go well!!!
The following user gives a hug of support to Georgek04: Shirlett (04-23-2013)
The Following User Says Thank You to Georgek04 For This Useful Post: Shirlett (04-23-2013)