I couldnt believe it when I accidentally found your post.. I have been looking all over for other people who have the same problem.. Mine started when I was just 15.. I fell on my face and ruined the disc.. To make a long long story short.. I've had five operations with two sets of silastic implants which ruined the bone.. Now.. I'm going to have to have a total jaw replacement. And i'm scared to death.. I dont want it.. But I have no choice.. Please email me anytime you want so we can trade stories and maybe console each other thank you so much.

Marylee

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!

Hi my names judy im from wales cardiff and I just noticed your email on the forum. I hope you get this as people with severe tmj are quite hard to find in the uk.I dont know if your going to get this so I wont send a long email. If you do get it please get in touch with me. All the best for xmas judy

I found out that I do not need christenson replacements now.. Instead, I will have the rib graft.. So I feel a little better about that. For now.. I have had five other operations with silastic implants which ruined the bone.. I really dont want any more operations. But I cant open my mouth beyond 5mm. And I have lost 32pounds.. Etc.. You know.. As well as the hearing loss.. I'm sure there is alot of ankylosis and scar tissue in there. And i'm positive i'll feel better, however, I have never been wired shut before. And for some reason.. I am obsessing about that.. So if any of you have been wired shut. Please share any stories about it.. No horror stories please..

Thank you

ml

Hi my jaw replacement op has turned another corner since I left that post on the forum in march.The christensen joints have been made but the were not sure if it would straighten my face. I have seen another dr two weeks ago who uses concept joints, he has taken moulds of my teeth to see if my bite will come together if I have my jaw moved forward.He also said he was'nt sure if they could operate on me and make the pain ect any better than it is now.He also said that the next tablets up to mine are morphine,which I dont want to get into at the moment.Until I see him next month I dont know what will happen to me.Do you know when you will have the rib graft?.Lots of people are afrid to be wired shut in case they are sick, but I was told you could ask to have rubber bands instead but that was in the us so I dont know if they do that here. Take care of yourself and please keep in touch, judy.

Hi

i had a rib graft on my left tmj which unfortunately failed, but I did not have to have my jaw wired shut after the surgery, please get in touch if you need any more information on the rib graft procedure.

Take care
sammi from scotland

Oh no, dont tell me that.. Why did your rib graft fail?? Oh noo. I only have two more days before I have surgery.

Marylee

Hi,

sorry I didn't mean to worry you, failure of rib grafts are very rare, I am allergic to certain metals (didnt know that until recently) so my body didnt like the screws keeping the graft in place. Hence they came loose as did the graft. It was replaced by a titanium joint which also failed that is when they realised I was allergic to the metal used in these procedures. I am still awaiting a solution. Best wishes for thursday. Let me know how it goes, hopefully you wont need your jaw wired shut, I certainly didn't.

Sammi

Thank you for writing back and explaining.. I was phoned last evening by my surgeons assistant.. Who said I needed to come in today.. Because somehow they didnt get the teeth models. (so they know that my teeth are aligned again afterwards).. Ohhhhh.. So me and my father trecked back to boston.. And it was fine. They also took some pictures of my face and opening. Etc.. By the way, I did ask him if it was a possiblity that they woulnt wire me. And he said yes. But they will know at the time of the surgery.. But I will have some kind of splint in my mouth. They actually asked me which side I wanted the ribs removed.. They take two out.. So I said the left side. Which is my weakest side.. So,, I guess i'm all set for tomorrow.. Did I tell you that I once visited edinburgh scotland??

Thanks again..

Marylee

Hi marylee,

i hope your surgery went well and that you are not in too much pain at the moment. Just remember to try and stifle your coughs and sneezes for the next little while to save your ribs. I found it better to put my hand over my ribs and kinda hold it when I had to cough.

Let me know how you are doing.

Sam

ps edinburgh is not very far from where I live, its a beautiful city (well at least in the summer months)

Hi marylee hope you op went well and that your not in two much pain.As soon as you feel up to it let us all know how your doing, thinking of you your friend judy.

hi my name is stuart, im 30 yrs old i have had 6 tmj operations that have been unsucsefull i had the last one at the beginning of 2008 and that was not sucsesfull either, i have now been refered to someone at bradford r/i about a double joint replacement and i am terrified please message back if you have had the same or about to

2 yw
2 YEARS AGO.. i had rib implants.. they have worked out so much better than those terrible silastic implants... as a matter of fact, i am in a lawsuit with those horrible things.. i would say.. look around and find the right surgeon.. who knows what they are doing.. go by the xrays!!!!!

my sergon mentioned about using rib grafts, but suggested that the implants were a better option i dont know which kind they plan to use but either way it all sounds brutal .How long wa the recovery after you had the implants and did you have them both at the same time, does it relieve the headaches and feeling sick i would love to have a proper nights sleep sorry about all the questions but its nice to hear from some one who knows what its like .

I was diagnosed with "resorption of the condyles". I was told the only thing to fix my jaw was double joint replacement. I'm not in a lot of pain - but I now have a pretty wide open bite. I don't like the way it looks! I'm a 43-year old woman. Has anyone been diagnosed with this? I'm desperate for some advice. It seems like a really serious surgery. I'm not sure what to do!

Thanks

Hi,

I also have had 6 surgeries, including rib graft (failed), titanium joint (failed) and most recently in March and May last year left and right Lorenz joints. The left one is fine but the right one still causes pain, and has a lot of scar tissue builiding up between the 2 parts of the joint so am going for steroid injections into the joint every 4 weeks.

If you need to know any more about replacements eg recovery time etc please feel free to ask me.

Take care Samara

wow samara--i havent seem you areound in forever! how are you doing?

Hi,

I'm due to go see my specialist next Friday to work out what next steps. I have had TMJ issues for the past 10 years. My last specialist just kept giving me steriod injections which worked at first but after a while they lost all effeciveness. I currently undergo physio through actup[uncture once a week to help with the pain and overall muscle issues.
My xrays showed upwards of 70% bone degradation in both TMJ. I haven't seen my mri results yet, but my new specialist has.

I'm looking for some guiadance in what kinds of questions I should be asking my specialist. I dont want to go in there completely cold (and this forum has given me more information than I've found anywhere else) and I was wondering if you guys could give me some advice.

It will be greatfully recieved!

woozle

wow you are only supposed to get one steroid injection in your lifetime---why did they keep giving it to you