Hello, friends,

I don't post here much anymore but we have a situation that I wonder who else may be experiencing the same. My husband is almost 6 years post DX. Things have settled down for him as he has not had any infections in about 6 months.

What is plaguing him now is that his mouth opening has significantly decreased in the last 6 months. For the last couple of years, he has been doing stretching exercising a few times a day using a cork between his teeth. That has been somewhat successful until now. He can barely get the cork between his teeth as the effects of radiation are rapidly making this almost impossible.

Meals are more difficult as the space in which to place food in his mouth is so small. He wants to get a few opinions from different surgeons to find out if they can release the tightness. Of course, my concern is the distinct possibility of infection as this has been his nemesis.

In the meantime, I am going to plan more meals that are of smooth consistency. Got to get myself a VitaMix. I remember Charm really loved having the same meals as his family with that appliance. Chewing has become very difficult for him and getting a fork in his mouth is near to impossible.

Has anyone else had a similar issue and what are you doing to address it?

Radiation...the gift that keeps on giving. My best to all-

Anita

The main stay of treating trismus are the exercises, although limited, and use of the Dynasplint, Therabite. There is Pentoxifyilline, and micro-current electrotherapy that may help some, and surgery, coronoidectomy, but the problem with that is the radiated area is more widespread, involving adjoining muscles, so the problem could arise again with fibrosis of these areas.

Do you measure the mouth opening? Mine is about 1/2 inch, from top to bottom teeth, which may be about 12mm, which is severely restricted on several type measures grades, not that it changes much for the problem.

Tell the doctor, who may have to rule out any recurrence just to be on the safe side. Good luck.

Acupuncture and Active Release Technique can get more range of muscle in the jaw and reduce sharp stabbing pain from the jaw to temple.

Be sure and keep the area clean. Manuka honey has peroxide and is antifungal, antibacterial.

Sorry to hear Clark is having a problem, Anita!

With his history there may not be much that can be done to help the situation. A surgery would probably be out of the question. If I remember correctly, he had some healing difficulties a while back with his jaw. The only thing I can think of is seeking out a physical therapist who is familiar with patients that have jaw issues. I went to one years ago who worked out of Nesquehoning which is pretty far from your area. Im sorry, I wish I had more suggestions but unfortunately this could be scar tissue building up and affecting his mobility.

Good luck!

Hi Anita. Unfortunately I have nothing to offer except that this sucks! Thinking of you both. Wanda

Thanks everyone for your suggestions and comments! This is a very frustrating problem (aren't they all). I agree with you, Christine, that surgery is probably not the right way to go, He did have major issues with healing and infection.

Paul, you mouth opening is about the same as Clark's. What kinds of foods are you eating? He has a really hard time getting ANYTHING in his mouth.

We will look into acupuncture. And, Wanda, thanks for thinking of us!

I'll let you all know what we pursue and what the results are.

Best to all-
Anita

My teeth are an issue now, and until recently, I ate everything. I don't think I missed any type of food, although my bites were smaller, pieces cut smaller, sandwiches made wound up being salads, I still managed and gained 30 pounds since the end of my last treatment almost a year ago. I do tend to eat certain foods taste wise, and because the dry mouth, swallowing issues, so a lot of soft foods, with sauces, casseroles, pastas, tender fatty cut meats, braises, fried. Not much fruit since I don't taste that much, but better than it was with none.

Good luck.

I have the same problems with my mouth. I will see a PT. in about a week. After the hemmorage I gained some opening ability. but has gone back to where it was before the bleed. I am sure along with the blood that I got a lot of the lymph out and fibrosis seemed a bit better as well. Can they go in a suck some of the lymph out? I think if they can it would help me get through the danger zone of bleeding again from my tonsil bed. I hope that you find something that will Help your husband get his mouth open more. shawn U

There is liposuction for the lymphdemia in the cervical neck done in a Nova Scotia Hospital, which may be the only one. The other thing is lymph fluid, blood, may not have fully drained when the tube was in after surgery, and taken out too soon. I believe they can go back, and draw it out. Not sure about draining with a tube.

Be VERY careful doing anything to the radiated area. When Lipo is done usually there is a lot of under the skin bruising or bleeding and my RO strongly advises against subjecting the radiated area to that trauma or at least he did 7 years ago. My wife's plastic surgeon has told me repeatedly that he could removed the unwanted skin under my neck regardless of the radiation but I'm cautious (chicken).

Point is do check this out and get more than one qualified opinion. JM2C's