Hi folks, I may end up posting this question in "after treatment issues" as well but I thought I'd put it here since it is about a emdical procedure. I am 2 and 1/2 years done with treatment and have fiarly bad trismus. I can get my mouth open wide enough to accomodate a soup spoon with stuff on it and a child's toothbrush but I can't quite open it wide enough for the dentist and dental hygenist to get to the back of my my back teeth well in terms of cleaning, let alone if they had to get a drill or something in there, let alone if they wanted to take xrays. Also my cheeks have a lot of scar tissue and are very tight against my teeth so that often I have little ulcers from the teeth rubbing against them.

And although I am using a flouride rinse, I am having some signs of problems with my teeth. I also have bad jaw cramps onece in a while which i assume is related to fibrosis in my jaw from the radiation as well.

Anyway, my ENT, who is local, not at a CCC, but did train at a CCC, and did my partial glossectomy and neck dissection almost 3 years ago, says he has done surgeries before where he goes in to the area where the scar tissue builds up around your jaw and basially scrapes it out. He says he would do it with an oral maxillofacial surgeon who is local and who I have also seen (thought not, unfortunately, until after I'd had radiation but that's a long story) who has a good amount of experience treating oral cancer and knows alot about things like the risk of ORN etc. he thinks he and this other doctor could help reduce the tightness of my cheeks too.

He says this surgery is painful and it takes a while to recover (so if I had it it would be over my suymmer vacation. oh joy.). He doesn't think I'd need HBO therapy beforehand as he doesn't believe there is any risk of ORN--they wouldn't be doing anything to the jawbone except scraping the scar tissue away from it and there is no open wound to the bone that needs to heal which is what I understand can cause ORN.

Anyway, I'd like to know if anyone else has had or even heard of surgery like this, was it efective in reducing the trismus, how bad was it in terms of pain and healing time and any nother info. you think may be relevant.

I can't say I'm thrilled about getting it done locally but that's more about the hospital than either of these doctors who are very good doctors. But that hospital has made, or almost made (but not quite, thanks to me being an advocate for myself) several errors in my encounters with them, some of which were or could have been reasonably serious. Just today i went for a scheduled mammogram and had to argue with them about which breast they should be looking at (finally asked that they call my doctor which got it straightened out). I won't even go into the other stories.

But the hosptial I go to in Bosotn that helped with surgery on my stricture doesn't even have an oral maxillofical surgeon on their staff, let alone one with experience doing this surgery.

Nelie