First how is everyone's progress???????? I will be returning to Shands May 31st, my own left Mandible is not strong enough nor is there enough of it for me to continue without the implant in there & I am not willing to wait & see if not having it will tear up the remaining left side & or the right side so surgery #20 will be happening. The GOOD NEWS is over the past 4 weeks feeling has returned to my face after 9 years, my chin is still numb but no biggie. Nice to lick my lips & know that there is no food hanging off of them! Lol!
Pam, NavyMid, Sorbil, Georgek04, TMJC, Tom, how are you doing????
Last edited by Shirlett; 05-08-2013 at 02:00 PM.
Reason: I can't spell.. :)
The following user gives a hug of support to Shirlett: Georgek04 (05-08-2013)
It is great to hear from you. I think you have made the correct decision in not waiting. It is also great news that your feeling is beginning to return. I just had the CT scan done on Monday to send to TMJ Concepts to begin making the new prostheses. With any luck, I will have the surgery to put the prostheses in by early July. Other than that, I have to see my OD on Monday because the banding to hold the jaw in place following the explant surgery was placed on the wrong side. Not to sure where the miscommunication happened, but it will be corrected soon. My lower jaw has dropped drastically down on the right side creating about a 7mm openbite. On a good note, my ROM is still at 41mm. I am sure this is partially due to not having a joint on the left side, but it is nice having opening back. Chewing is very difficult with no bite contact.
I look forward to seeing how your upcoming surgery goes. I will be keeping my fingers and toes crossed.
The following user gives a hug of support to Georgek04: Shirlett (05-08-2013)
The Following User Says Thank You to Georgek04 For This Useful Post: Shirlett (05-08-2013)
Shirlett, it is good to hear you are doing well! And Georgek, I hope you don't have a long wait to put the new prosthesis in. I am doing ok... I moved from FL several months ago, and away from my surgeon, so I've been on the search for a new one. I have found one that does TMJ concepts surgeries too, and sadly he stated two weeks ago that the extra bone growth is back. For now he wants to wait, and I don't know what I want to do, it doesn't seem to be limiting movement any more than it is already limited, and the pain, well, I just don't know if it will ever go away!
I was going to have a "neurostimulator" put in for te pain- it is still experimental for facial pain- but the insurance denied it because of that. So now it's back to the drawing board. I did start physical therapy again, they are mainly working on my neck which is really tense (I wonder why, haha!)
Otherwise, I am actually getting my "jaw story" published! The publisher said it should be out in 2-3 weeks which is super exciting!! I know you all can relate so well to what I've been through!
It's good to hear from y'all!
The following user gives a hug of support to navymid: Shirlett (05-16-2013)
I made the 13 1/2 hour round trip to Shands yesterday & feel like I have been RUN OVER by a bus today. Hummmm. Maybe I am too old to be making this round trip in one day.. Anyway..ALL the screw holes have closed up (WOOHOO) all of the nerves & muscles are working in my face again after 9 years!!!! So YES feeling can return!! The feeling along with me slamming my teeth together when I am trying to eat is the cause of my pain & discomfort. The way it was explained to me is I DO NOT KNOW the force at which I am applying while eating. So NO plastic silverware and I am to really focus & pay attention well be very conscious while eating to keep from slamming my teeth together. I will have to make the trip over to Gulf Breeze, Fl next week & get a 3D CT SCAN & once TMJ Concepts receives & reviews it then I will know if the entire left side will have to be replaced OR just the condyle, mandible and disc....so surgery number 20 is gonna happen & I am doing everything I can to make it my LAST! I am happy to have feeling back in my face BUT wow...going for so many years you get use to being able to do things without feeling..like getting your eyebrows waxed and NOT FEELING A THING! WOW it does hurt! I have to use caution flossing & brushing because I will make myself bleed. So I will continue to move forward. PLEASE NEVER GIVE UP AND NEVER GIVE IN!!! I hope everyone has the best weekend they can! Enjoy what you can!
Sounds like great news, except for the exhaustion from the trip. I have the same problem with having to be careful when chewing without the prostheses. I only have two teeth touching and sometimes these teeth hurt from biting down too hard. My prostheses surgery has been delayed until August 14th. I can't wait to get the condyle portion of the prostheses put back in. My ROM right now is 47mm. You are indeed correct to never give up and keep fighting!!
The following user gives a hug of support to Georgek04: Shirlett (06-01-2013)
The right side TMJ Concept is PERFECT better than the joint I was born with! It has ALWAYS been my left side that gives me trouble. The left Fossa that TMJ Concepts made a little different & was put in July 2012 is PERFECT! Like you I am very uncomfortable without the remaining parts in on the left side. For me it is like walking around with a sock & shoe on my right foot & going barefoot on the left...I HATE surgery, it scares me more than ANYTHING but part of me just wants to get #20 done and out of the way so I can start healing! Your surgery has been set back until August??? I will not have a date until the guys @ TMJ Concepts get my 3D. CT SCAN. Then they will know what has to be put back in & how long to make the implant parts..UGH!! Dr. D showed me a picture of a christionson that was removed from a female that had broke in FIVE places..I feel for her because I KNOW she felt that. Just having the Left Fossa break twice in my head caused a level of pain I did not know my body could produce!!! Keep me updated for your surgery. Have you already had your scan done? Are your parts being made?
I had my 3D scan done about 3.5 weeks ago and also a new impression of my bite that was done the week after the 3D scan. TMJ Concepts requested the bite impression after they received the 3D scan. So they are indeed in the process of making the prostheses. The reason the surgery has been pushed back is more so due to my surgeon wanting to take more time to recheck everything behind TMJ Concepts to ensure everything is as perfect as it can be. My surgeon stated it was my fossa that was actually the problem too, but removed the condyle. Once the condyle was removed, all pressure and pain in the fossa area stopped. In addition, my ROM increased from 12mm to 47mm.
I feel sorry for the Christensen patient too. That must have been painful. You know all too well the pain of a broken prostheses. My right side prostheses also seems to be perfect with no problems at all.
I will surely keep you updated as I move closer to surgery. I am sure I will get an update a little later this month on the progress on the prostheses. Please keep me posted too!! Has your explanted prostheses been sent back to concepts?
Sorry to hear about sugery #20!! But good news about feeling! I was wondering if you have tried speech therapy for the chewing problems? I had actually forgotten how to chew since I hadnt done it in years, but went to speech therapy and it was amazing! I never knew a speech therapist could help you learn to chew again! I highly suggest doing it.
As an update for me, still in a lot of pain and coming up on my 2 yr TMJR surgery anniversary in two months. I was going to try a neurostimulator surgery but insurance denied it. I am now considering deep brain stimulation for the pain.... On another note, I wrote a book about my jaw story tht just got published! Im hoping it will really help a lot of people.
The following user gives a hug of support to navymid: Shirlett (06-01-2013)
The Following User Says Thank You to navymid For This Useful Post: Shirlett (06-01-2013)
No I had never considered a speech therapy but will look into it. Congrats on your book! I was approached over 5 years ago but declined. Too much personal info that I was not comfortable with sharing with the world. Might change my mind one day, maybe! I REALLY hope you find something that will work for with with reducing the pain. Do you "feel" your implants? Do you "know" they are there?
Yes they received the removed implant parts and once they went through "decontamination" they were inspected. The implant parts were perfect, so bends, no fractures nothing just ten screws & 9 of them were broke into 4 -5 parts..no explanation why..they do not know. They "think" when the left Fossa was put in July 2012 the remaining parts on my left side had to be unscrewed, moved & readjusted from where they had been for over 3 years, so they again "think" the unscrewing & moving the implant to another angle weakened the screws & they worked their way out breaking in the process. It is what it is. We are all guinea pigs for the next generation of TMJers. I called & tried to schedule my 3D CT but the department had closed for the day so first thing Monday I have to call. Have you seen your images? Once they are converted to 3D I have Eric email mine to me so I can look at them. Pretty amazing!!! I will let you know when I am on the books & will stay in touch with you.
I do think I developed an addiction to dry cereal...Life & Honey Bunches of Oats with Almonds. Wonder if it is due to so many years of ONLY eating cereal after if had soaked in milk & became slop???
The following user gives a hug of support to Shirlett: navymid (06-01-2013)
I can definitely "feel" the implant, and it feels like a constant stabbing pain right under the joint. Like it feels like a screw is poking into a nerve or something. It's a horrible pain that never goes away :-/ But both my old OS and new one say everything with the implant is fine.
I know how you feel about your story, I am a little nervous about all the personal things- thoughts and frustrations- that are in it, but I think the honesty is what will be of encouragement to others going through hard stuff; just to know they aren't alone!!
For me, PLEASE KEEP IN MIND THIS IS MY EXPERIENCE!!!!!!!! I was still in pain after the first two sets of TMJ Concepts and I KNEW THEY were there 24/7...once they (TMJ Concepts) did this last set, I really do not know what they did, I did send them pictures BEFORE my car accident & BEFORE I had ever heard the word TMJ. That is what made this set (#3) VERY different, I have NEVER felt them and went days without even thinking about them that is when the pain went AWAY!!!! It is just something that is in the back of my mind third set made ALL the difference in the WORLD..not saying you need 3 sets, I just think there is something as to how they sit in place...I think if they "hug" the contour and set the way your original joints did it is not such a big shock to your face. Again this 3rd set I have never felt from day one. When I would bend over it did not feel like my head weighed more than my body, with the first 2 sets I just ALWAYS knew they were there.
Last edited by Shirlett; 06-01-2013 at 02:28 PM.
Hello My TJR Family!
My CT SCAN is scheduled for 1:00 pm (central) time tomorrow. I did find out TMJ Concepts will be able to upload the CT Scan directly from the hospital so no waiting for a CD to be made and sent via Fed Ex to TMJ Concepts, so once the scan is converted to a 3D image and the Concept guys review it I will know if the opinion is replace the ENTIRE left side as one component OR just remake the condyle, meniscus & mandible to fit the Fossa that is in place AND once that decision is made I will have a surgery date . Really, really having hope TMJ Surgery #20 will be my last and I will not think about TMJ every day! We are SO CLOSE to getting a perfect fit, great function and most important PAIN FREE!! I know the rest of you are going through your own bumpy path but for ALL OF YOU I send White Light to get you to a life with good function and little to NO pain! Never give up or in! We are SURVIVORS of TMJ and it is NOT who we are it is just a learning lesson. One filled with extreme discomfort and pain but NEVER let the TMJ RULE YOU! This is YOUR LIFE, LIVE IT!!!