Hello everyone. This is my first post, although I have visited this website before for information.

My uncle was diagnosed with oral cancer in July of last year (2005). He has not been very forthcoming with details so I'm not entirely sure what his precise diagnosis was. (He lives in Oregon and I'm in Illinois, otherwise I'd join him on doctor trips whether he liked it or not!) I immediately found this website to arm myself with information, which both heartened and frightened me. Anyway, he went through a treatment trifecta (surgery, chemo, and radiation) and was declared cancer-free last fall. I went out to visit him in December and he seemed to be recovering nicely; his sense of taste was off and his speech was slurred due to holes left in his soft palate, but he was eating well and his spirits were great.

Unfortunately, throughout the month of January he began losing the ability to open his mouth. I was unaware of this until just last night when he phoned to let me know. I could barely understand him. He is off to meet with his doctors tomorrow and promised to let me know what they have to say. I immediately logged on here to find information about this new hitch in his condition. I have found some very helpful information on Trismus here, but I'm hoping that someone who has been through it can provide me with some more personal information. The clinical stuff is great but I'd really appreciate a more subjective account of the physical therapy and recovery from this problem.

Thanks in advance. He sounds so down right now, and I have no idea how to buoy his spirits. At least if I have more information perhaps I'll be able to help in some small way.

Diane

Diane,

It is unfortunate that your uncle's doctors did not warn him about this problem which is a known side-effect of head and neck radiation. Ideally he should have been doing some sort of jaw-opening/stretching exercises throughout treatment. However, that is water under the bridge -- now he needs to have some help. As a first step, he needs to speak to his doctors and get a referral to either a dental oncologist or a speech therapist (both of these can deal with this problem).

The OCF pages mention a device called TheraBite, which has been shown in some studies to improve trismus more than other stretching exercises. Many insurances, e.g. Medicare, will pay for this device if it's prescribed by a doctor, dentist or therapist. My husband, who was diagnosed and treated at about the same time as your uncle, got a TheraBite and found it easy to use. He used it about 7x a day during treatment and continues to use it, albeit less often, since trismus can (in the words of his ENT) "creep up on you." He has no trismus now but did have some resistance opening his jaw towards the end of treatment, so is not being over-confident.

The therapist can probably help wih his speech issues as well...

Gail

Diane,
Your uncle's timing seems to be just about the same as mine. I finished treatment in February 2004, and by late April, Trismus had snuck up on me and I went from being able to insert 3 fingers between my teeth to only one. My ENT prescribed the Therabyte, which, like Gail's husband, I used ~7 times a day for a couple of months until I was back to normal. I still have it, but use it only infrequently to measure any loss of range of motion.

Just for info, in dealing with Therabite, they will only sell to someone with a prescription, and they made me pay up front for it ($400). They took care of submitting the claim to my health insurance. BCBS paid 90% of "durable medical equipment". My insurance screwed up and sent the check to Therabyte, and it took several phonecalls to get reimbursed. With all the claims out there, it easy to lose track, and this could have easily slipped through. I'll give them the benefit of the doubt and assume it was an honest mistake.

The device itself is very easy to use, but I'm not sure it's any more effective than the tongue depressors my former hospital roomate used.
Gail's recommendation to seek out a speech and swallowing therapist is spot on. Mine was very instrumental in the success of my recovery.

My best wishes to your uncle for his recovery, and to you for being involved.

Good Health,

Chuck

After my first surgery in May of 1999, my surgeon ordered a Therabite and sent me to a physical therapist with experience using it. The help came for me in having someone else stretch it for me since I didn't have the strength (physical or mental) at that time to use it on myself effectively until it was a maintenance-only tool. I did find it to be more helpful than homemade tools, however. I was never able to regain complete pre-op opening of my jaw but it greatly improved chewing efforts or I would have been on liquids for the six years leading up to my current condition.

The main suggestion I remember as most helpful was to take my pain medicine about 20 minutes in advance of therapy/exercising to reduce my natural tension and resistance. The stretching of that scar tissue worked much better with a little medicinal help. (Of course I was also told a cocktail or two would have a similar effect!)

I wish you and your uncle success in resolving this frustrating problem!

Ruth

My physical therapist also does intra/extra oral massage to help trismis. I'm certain all of these things should help, but it is a problem that needs to get addressed immediately because it will only get worse. The doctors shouldn't have let it go this long.

Take care,
Eileen