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!

Hi, Anita
this is a shot in the dark, but is there any chance muscle spasms are contributing to the pain? Could you ask the PCP about muscle relaxants - if not contraindicated? This wouldn't be a solution to the problem, but maybe it would help the pain a bit. I have arthritis, and use them when my TMJ flares.
Best wishes to you and Clark.
Maria

Hi Anita, trismus is miserable! I wish I had a solution to offer. You mentioned that Clark uses his Therabite daily -- I don't know if you meant multiple times daily, but I was told to use mine 7 x a day. I also try to work in exercises recommended by Sloan Kettering here:

http://www.mskcc.org/cancer-care/patient-education/resources/trismus

The same site recommends seeking out a rehabilitation doctor for persistent trismus. Maybe that's an option for you?

I personally have found it helps to yawn a lot.

Clark has my sympathy, good luck, PLEASE let us know if you find the cure!

Lynn

Anita,

It's very unfortunate what Clark has going on with the jaw. This doesn't help, I know, but very few end up like him. Some acupuncture has helped some but the only fix when it gets real bad is to cut the tendons or ligaments in the TMJ. The problem with that is the mouth won't shut and I'm not sure if people can even chew after that. Everyone I know faced with that opted out of the surgery.

Maybe someone else knows some more successful remedies but once the muscles cord out and contract like that, the only thing works has to be done before that point.

Hi I have been 5 yrs out of rad and have started to experience jaw problems with decaying teeth and need to do HBO and noticed that I can't open my jaw as wide as I used to. I don't know what Therabite is and I am scared of getting teeth pulled due to ORN. I can't believe that with all the research and money this is all we get is rad and chemo, years later still more of the same. I truly believe there are things not told to us. Hope you find more answers cause I am finding out how difficult this cancer can be.

Hi Anita,

I'm so sorry about Clark's issues. I truly understand his frustration and never ending pain and discomfort.

One possibility you might look into is a Scar Contracture Release/skin graft. Over the past 4 years I have had this procedure performed several times by a Plastic surgeon that has a history of working with head and neck cancer patients, but she concentrates on cosmetic surgery these days. As we know, flaps after radiotherapy become shrivelled up and extremely difficult to work with, not to mention the risk of infection and so on.

To perform a scar contracture the surgeon makes the incision in the flap, widens the incision several millimetres and covers the wound with a piece of skin taken from another part of the body (in my case usually the hip area). They stitch the skin graft over the wound. During the healing process the skin graft basically blends in and becomes the top of the flap and in turn has extended the size of the flap. Before I met my current plastic surgeon I was told in no uncertain terms by two top notch plastic surgeons there was nothing further they could do for me to help improve my quality of life. My mouth cavity was a twisted useless mess. Thankfully I continued searching because the function loss I was dealing with was truly unbearable. My situation has improved slightly with these ongoing procedures. Every bit helps!

I'm not sure if Clark would be a candidate for this type of surgery, but I would seek professional advice about it.

Please don't hesitate to ask if you would like more detailed information.

Karen