Hi,

i had a total tmj replacement on 27/9/05. This was the third attempt to solve the problem. I had a rib graft in 2003. They removed part of my tmj and grafted in some of my rib but that failed. In may this year they implaned a titanium tmj but my body rejected the metal and unfortunately the joint broke in 2. They removed the joint on tuseday this week and were going to replace it with the new joint they had made. But obviously when they realised that I was allergic to the metal, they had to sew me up without the new joint. At the moment they are unsure as to what's next although I am assured that some people can live without this joint. At the moment it is fibrous tissue doing the job, kinda freaky huh! April next year is my next milestone as this is when they can go back in and hopefully solve my problem, maybe using a plastic prothesis instead. Good luck and let me know how you get on.

Any more you need to know give me a shout.

Ps the pain afterwards is bearable, there is some severe swelling but that goes down fairly quickly.

Samara

I am also having a tmj replacement in december and for the reasons samara gave I have also had metal allergy tests in case of rejection.
Mr speculand at the qe is doing mine. Has anyone got any experience and advice they could part with?

hi,

i am 68 years of age. In 1968 I had both tmjs totally demolished in a road accident, together with about thirty other facial fractures and damage to the rest of my body and spine.. They wrapped me in scaffolding and just allowed it all to heal together.

Every few months I had to have some ankylosised bone chipped away it grew like a gnarled old oak tree to the size of golf balls. I had 15 ops to use other tissue to form the joints. Whatever they did, the ankylosising continued.

In july 1997 I had a complete new set of krisstofferson (sp?) joints fitted. They look similar to the lorenz ones. They are a combination of sylastic and titanium. Since then it has been great. I was left with 32 mm of opening gap. This has again reduced to about twenty but I can still manage to eat most things and chew. There is very litle lateral or in and out movement. But has required no more surgery in that area since. It has affected my hearing on the left side. You will get used to the echo chamber effect quite early on.

the single x-ray doesn't shew the upper part of the tmj as it was specifically taken to see the plate on my spine, and the mesh is where my false teeth are screwed into the roof of my palate but the next two are the actual bits of the tmj on the left and the right. The incisions went from about two inches above my ear down in front of the ear and terminating about an inch below it. Before actually doing it the surgeon used a mould of my skull produced by the geeks at nissan to operate on it before actually doing it on me. Mine was third to be done and was the first ever double one and took twelve and a half hours.



My advice is to go for it!

I have had two sets of silastic implants in my jaw.. Unfortunatley they recalled them. As they ruin the bone.. Now i'm going for the rib operation.. I'm sad to hear that it didnt work out for you...

If that doesnt work. Then I must have the christenson total joint.. I feel that nothing makes this all better.. Once there is bone involvement. Forget it.. However, having said that.. I look forward to at least being able to open my mouth again.. I dont care if I have no side to side movement or forward.. Right now I cant even go to the dentist. My opening is about 11... My operation will be next month or probably in january.. Make sure you do your homework .. And get those mri and ct scans. Pleasssseee


marylee

My names judy im 54 and have been waiting a long time for double jaw implants. I find that there are not many tmj sufferers in the uk and id love to chat with someone nearer home. Hope you keep in touch and that if you've already had your op it all went well.Judy

Hello everyone!!

Thank you very much for all the responses much appreciated!! I had my joint replaced in october and all went well!! Despite the surgery going well and having the best surgeon possible I have a nightmare few months!! Spent time in hospital, became addicted to morphine and am now in absolute agony in my opposite healthy joint!! Am hoping and praying (i find out if there is a higher existence!!) that the healthy joint problems can be resolved as I am unable to utilise my new joint as in pain...... On a slightly lighter note if anyone is contemplating having tm joints replaced i'd say go for it-it works.....I just hope I get to use mine....Sooner rather than later!!!

Speak soon peeps.

Diggers

Not a nice operation is it! Glad it was a success though, sorry to hear you are having problems with the other side, is this connected to the surgery. I am waiting to see a surgeon about my right side, never thought I would be in this position again as I was assured that it was the fracture years ago that had caused the problems, but now I am in agony with my "good" side and its back to clicking and locking again but there you go life sure throws some crap at ya ! Take care.

Samara

Hi everyone!!

Right I am finally seeing my surgeon at some point next week!! Since I last posted anything here my left hand side has all gone into spasm. My lip is drooping and face all puffy!! My gp prescribed diazepam for me, altho it is a pretty low dose!!! Fed up and truly had enough now. To make matters worse I was given an interview for a trainee solicitor post (my dream!!) the vacancy is 4 hours away-i have had to turn them down.....It looks as if I have some form of facial palsy-they also want to see my medical records!!!! Think I need to sort things out-if not sort then at least be in a position to manage things adequately!!!!

Hope you all are well

diggers

Hiya diggers,

sorry to hear about your lastest set back, tmj really starts to take over your life doesn't it. My face still puffs up now and that is 4 and half months after surgery, and I drool out the left corner of my mouth if I am not concentrating, really attractive eh ! Anyway hope your surgeon can come up with a solution next week. I see mine in 2 weeks to talk about what my next option is for my left side (one without tmj) and for my right side (one with knackered tmj). Take care and keep in touch.

Samara

Oh diggers, i'm so sorry to hear about the latest setback. What are they (docs) going to do to help? Have you tried tens or anything like that? What a bummer about the job. If the valium doesn't work, ask your doc about zanaflex. I just started taking it when needed and I am very impressed with how it relaxes the muscles in my face. Yours almost sounds like the trig.... Nerve or whatever it is called (tn). What about lyrica, a nerve pain medication? I hope something helps soon.

You will be in my prayers.
Carol

Spent bit of time doing some retail therapy......Although don't really know where am going to wear all my stuff!!! Am fed up. Tried tens,hot and cold, lyrica (which is called pregablin here) am trying to stay calm although after the job setbeack things are slightly harder. In all honesty am preparing myself for the worst-in that my doc is going to tell me that there is nothing more he can do......Which fills me with dread!! Oh well c'est la vie!!

Disheartened

digby :(

If the doctor says there's nothing more he can do, can you go to a different doctor in london or even the usa? I'm just throwing that out since I know nothing about what experts you need and such, but I don't want you to get yourself worked up and down in the dumps. Maybe you could start some research to find a different specialist. Just a thought.

I hope the pain is becoming more manageable. Take care of yourself,
carol

Hiya

i know exactly how you feel, I am terrified my surgeon will say exactly the same, sorry nothing more can be done.......... After 3 failed operations I think he is now scratching his head thinking what the hell next? If I have to live with this pain for the rest of my life I dont know how I am gonna cope. Until recently I had at least one working side, but that is deteriorating fast, real bad luck. Sorry to hear about the job interview, hope there will be many more opportunities in the near future. I am a manager of an engineering company and find it a daily struggle to do my job well anyway enough moaning, take care.

Samara

I am becoming so domesticated it is scary!!!! Eeeeeeekkkkkkkkk

ok, spoke to my surgeon this morning and he has re-confirmed that I am psychologically sane (hmm!) he is seeing me on friday to discuss my options.....As samara probably well knows i'm happy to hear the word "options" however, no news given to me on thursday can really be good news in the sense that if he offers more surgery....I have to go through all the emotional turmoil again and if he says there is nothing further to do.......... Just trying to keep myself busy for the next few days!!

Have an awful headache today only had 3 hours of sleep last night so going to do what we all do no matter how old.......Get mummy to give me a massage!!! Hey I am the youngest its one of the many perks!!!!

Speak soon

love to you all

xxx

Fingers crossed for thurday, let us know how you get on. I see my surgeon on 13th march for my bad side and 6th april for what was my good side, but alas no longer....... Its crazy 2 appointments for 2 different sides with the same man ! ! ! ! Anyway not complaining because usually you have to wait months to be seen by this guy, but I suppose with my history they shoved me to the top of the list. I am averaging about 3-4 hours sleep a night, its real tough when my alarm goes off at 6.45am, my boss laughed the other day cos my desk is like the local pharmacy, covered in various packets of painkillers, anti inflamatories etc. Anyway take care and best of luck for thursday.

Luv samara xxx

Hi everyone,
i have been reading about your experiences. I'm 39 and after a car accident last year am now preparing for a left tmj replacement. Digby's experience sounds scary! I'm hoping I won't be left worse off. I've had metal allergy tests and i'm allergic to chromium so they are going to avoid that one in the manufacture. The implant will come from tmj concepts in california. I am in the uk and my surgeon is mr speculand. Has anyone else out there had a tmj replacement that worked well, i'd love to hear about it it might make me feel better! :?

Sorry I havent been on the forum for a while but ive been really busy with my dad.A few of you were due to have your ops by now, how are you getting on?.Ive just read about your setbacks and I bet you could scream why cant they do anything for us in the year 2006 when they can do so many other major things?Im still waiting to have my 2 concept joints put in the waiting list in birmingham is 2 years but as I look after my dad most days I couldnt have it at the moment anyway.I get a lot of pain and get so depressed with it all and I expect you do too.It would be nice to have some good news if anyones got any, take care welsh judyx

Hi judy,
i haven't seen diggers or samara on here for a long time (you too but I understand now why). I lost my catswold account for some odd reason and ended up having to open up a new one (just added an 's').

How have you been doing? How is your dad? I've been doing good with my tmj; just a few flare-ups occasionally. I broke my right foot which was a pain in more ways than one, but I healed and got back to normal.

I hope your tmj is doing well (you too.) :) I pray that everyone else is doing as well as possible.

God bless...
Carol

Im just writing you a small mail because I am having mr speculand as well when my turn finally comes up.Everyone seems to be having problems at the moment I hope things sort themselves out for all of us.Take care alll my love judyxxx