Trismus (lock jaw) after Head & Neck cancer treatment: What helps?

Thank you for sharing. I have been feeling isolated as I don't know anyone who has been through this, or even knew it was possible. I'm sorry you have been going through this. Everything I've read says if it isn't dealt with right away it can be permanent. I refuse to give up. Thank you for the suggestion to move the jaw side to side. My therapist had me doing exercises like that but I stopped after I couldn't move my tongue anymore. I will resume moving my jaw. My oncologist told me there is a surgery that can be done that cuts a muscle in the face. It does not have a high success rate, can only be done once, and is not permanent. I haven't gotten another opinion on that or otherwise pursued it as I want to gain more weight to get me above the low end of safe weight for my height. I hope the new year brings a breakthrough to recovery for you.

My experience with the therapist was the same as yours. She had me doing exercises that made me feel like I was doing something but had no results. May I ask what the name of the muscle relaxer you used? I'm glad to know that it helped you. It make sense logically.

Thank you for the suggestion. Please help me understand how you are putting the tongue depressor in the back. I put it in my mouth like you would put a bit in a horse's mouth. Are you then pushing it to the back of the mouth or are you sticking it straight in?

The first one was Cyclobenzaprine(I know I messed up the spelling) 10mg 2-3X daily. I am seeing a neurologist for my migraines and she just switched me last week to Baclofen 10mg 2-3X daily and it seems to be working better but it can make you drowsy.

Thank you! I will check these out. I am very fatigued from the chemo so I doubt if a bit more drowsiness will be much of an impact.

Considering all the amazing things that are being done in medicine, it’s frustrating that trismus is such a neglected condition. My mother was in a dreadful car accident in the 1960s and the surgeons were able to rebuild her face, although she had to have her jaws wired shut for months. My dad was in the Air Force, so mom was treated at the Fitzsimons military hospital near Denver, I think. Faces can obviously be rebuilt but radiation complicates surgery, as we all know.

My trismus progressed to the point that I could not fit an Oreo in my mouth as of 5-6 years ago. I have been trying to stretch my jaw open with my hands when I watch TV. I think it has helped a tiny bit. I can still chew a little. At this point, I think the best I can do is stop it from getting worse.

Don’t feel bad for me because it took 30+ years to get this bad and I could probably have stopped it if I had taken the warnings and advice from my doctors and dentists more seriously. It sounds like other patients developed much more severe trismus a lot faster than I did.

I hear your frustration and am sorry you have experienced this. In my experience, I don't think it is common enough for dentists and doctors to be aware of how serious it can be. I saw several of each when trying to get a diagnosis. I would describe the pain I was having when I chewed and as an aside say my mouth didn't seem to be opening as much. No one even commented on the possibility of it being irreversible. Thank you for sharing your experience. I am grateful for this forum. It helps me knowing I am not the only one struggling with this. I will think of you and others who have shared here as I try to get one more tongue depressor between my teeth!

I recently came across a program called Kieferfreund. There is a website and an application. It provides exercises for relaxing the jaw and correct tongue position. In corresponding with them it doesn't appear they have helped anyone with my specific symptoms but at least it is something dealing with the problem area. I want to see if anyone here has had any experience with them.

Hi, now I’m concerned for my husband as he is showing signs of trismus. The radiation his is given is right below his jaw.
I’ve looked at the exercises that are supposed lower the risk, but does anyone have any tips?
Thank you all so much!

Hi @vickie1320, unfortunately, Trismus or jaw muscle spasms that are so strong the mouth can’t be opened, can be a common side effect from head/neck cancer with treatments with radiation.
I’m so sorry your husband is having to deal with this along with everything else he’s been going through with his cancer. If he’s doing the suggested exercises this should help to keep his muscles flexible. But it’s important to continue with these even if he’s not having symptoms.

Has he talked with his doctor about this? I think you mentioned in another post that there is a dentist associated with the cancer clinic? That doctor would be a good source to consult with as they would be familiar with the condition and may have some good suggestions for your husband.
Consulting with an oral surgeon or a speech pathologist could be other valuable source for helping to get the mouth functioning properly again.

@hrhwilliam has experience with throat cancer, radiation and reconstructive jaw surgery. He shared his story with us in this discussion. If you haven’t already, I think this would be a helpful conversation to follow. The link is posted below.

~Radiation side effects with H&N cancer. When will they ever end?
https://connect.mayoclinic.org/discussion/radiation-side-effects-when-will-they-ever-end/
I found a couple of comprehensive websites for you about developing Trismus following radiation treatment. You already mentioned that your husband is doing some of these exercises but hopefully there are a few new things for you to try.
https://headandneck.org/trismus/
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https://www.mskcc.org/cancer-care/patient-education/trismus
Has your husband tried some warm compresses, such as warm washcloths or wrapped hot water bottle…not a heating pad?