My cancer started around my right mandible, I ended up having to have a partial mandibulectomy including my entire right tmj joint. I was diagnosed (not definetively) with malignant epithelioid hemangioendotheliomia. I am 18 months post op. Now I need a jaw joint replacement and I was looking to see if anyone on here has had one, what they thought about it and would they recommend it to other patients

Moved Reply:

Well I never actually had the replacement - I didn't look too bad after the op and I was warned it could be a lot worse if I did have the replacement - more pain, possibility of it not taking etc. Sometimes I have really regretted not having it done - others I'm glad I didn't.
I'm not sure this is any help I guess what I am trying to say is - it isn't compulsory and weight up the pros and cons. I have no right lower jaw and only a partial upper - it puts some strain on the left which can lead to a lot of pain - but it was a lot easier once they figured that it was the strain causing the pain! I lost a tooth in the process of figuring it out cause they thought it was the tooth! D'Oh!

All the best whatever happens and I hope I am in more pain than you are!

Tony

Moved Reply:

lol...Well the scar tissue is constantly pulling what is left of my mandible. Seriously distorting my face(well its serious to me) while my jaw was shifting it ground down 4 teeth to the gums and I think the joint is slowly being pulled out of socket. Its really painful I am on a soft food/liquid diet...totally sux...but thanks for the input

Hi fearless,
I've just read your post and thought I would tell you that I had jaw replacement surgery following mouth cancer 11 months ago. Bone and tissue from my lower leg was used to reconstruct my jaw and rebuild my face. Unfortunately this surgery failed and I had to have it done again 4 days later, using the bone from the other leg. I had a course of radiotherapy and chemotherapy after this which was a gruelling time but I am happy to say I have come through it all smiling. Eating is slow and has to be tiny pieces, but to be honest, there is very little I can't eat. I have a slight speech impediment, which my brother affectionately calls 'talking with a limp'!! I have been left with substantial scarring to my lower legs, under my chin and my neck, but there is no scarring to my face. If you are going to get a better quality of life by having this surgery, then I would definitely say go ahead. Wishing you all the luck in the world.
Dian