Hello, All,

I have written about this issue before but in the hopes of learning of some new treatments, I am bringing this up again. Clark's ability to open his mouth has decreased significantly over the last year. Coupled with continued pain, his QOL is taking a nose dive. We had asked the Plastic Surgeon and the Oral Max if there is ANY thing that can be done. Clark wonders if any surgeon would consider replacing the flap. Both say no and that's where I am hoping that someone else has found a solution.

Radiation has caused so much damage that he can barely open his mouth to eat. I have now drastically changed the way I prepare meals for him. Everything is soft, cut into very small pieces or smooth so that he can get a very small spoon into his mouth. Add to that continued pain so that ANY chewing results in discomfort so severe, he has to take a Percoset to get past it.

Clark has a TheraBite and uses it daily but he is getting minimal results if at all. What a s@#*y way to live! Yes, we are grateful he is NED but he is so worried that he will have to get another PEG tube someday. I realize that there are many that have it way worse and I was reluctant to post because of that. I want to help him in any way I can. We would be willing to get second, third opinions.

I just don't know what to do next or with whom to contact. The issue with surgery is scarring and poor healing. Plus if there isn't a problem, ie recurrence of cancer, or infection, no one will consider that. We understand but in this day when medical science has so many hopeful things, I guess we figure that maybe SOMEWHERE out there, SOMETHING can be done.

Clark is unwilling to accept that this is the way things will be from now on. And I want to think that there might be a solution. So, are we pissing in the wind? I think the docs are following the "first do no harm" which makes sense. But where does one draw the line? Medicine has evolved in that things that are standard today weren't even a thought in someone's mind 100 years ago.

My husband will be interested in reading your thoughts about this. Help, please!