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

Hi @vickie1320, trismus or lockjaw is spoken as a symptom of what is happening but in reality it isn’t trismus. But that’s ok as I understand what is happening. The mandible or lower jaw bone and tissue can get rather stiff from radiation making it hard to chew let alone open your mouth very far. It’s actually the opposite of lockjaw where you cannot close your mouth. Be that as it may, your husband should continue with trying to exercise his mouth best he can. He could try chewing gum perhaps. If of course things should get worse or too far out of hand then by all means ask the oncologist for some help.
I believe your husband is still in radiotherapy is that correct? He may find eating difficult for months to come. I personally eat a hamburger and really pretty much everything with a knife and fork. After many years I can finally enjoy corn on the cob but I still eat apples with a knife in slices. Life is what it is sometimes but we are still enjoying the green side of the grass.

Thank you! He started the trismus exercises yesterday. He is able to do them without much difficulty so far. He is 1/3 way through radiation. We meet with his doc on Monday, so we’ll talk with him too. I will definitely set a meeting with the speech therapist as surely she can help.

hi,
I had surgery for tongue cancer in February 2022. I have been on a feeding tube since then with no improvement in swallowing or chewing food. I can only open my mouth a very small bit. Not sure where I can go from here as I have seen dentists and doctors to help with no success. maybe a facial surgeon.If anyone has any info I would appreciate the input.

I was diagnosed with HPV16+ OSCC in March 2023. I had TORS robotic surgery April 2023. I had a right neck dissection as well with all lymph nodes removed and TORS surgery to remove primary tumor of 3cm at base of tongue. All margins clear. Also, I just completed 30 rounds of Proton Radiation 6 days ago. I did tongue, jaw and neck and swallowing exercises daily several times a day( On the way to treatment is a good time). There are tons of videos online. However, If you have a Speech therapist they can help you with this. As of today 5 days post radiation I can still eat and drink. Think soft foods. Eggs, Cottage cheese, noodles, soup, Milkshakes,Boost etc. I still have jaw tightness on primary side and mouth opens only so far but enough. I still cannot taste much, have minor mouth soreness, and Not much saliva, Dry mouth. I REALLY worked on exercises during treatment as I did not want to go on the feeding tube and "forgot" how to swallow as that can lead to major problems do the road. I basically forced myself to eat from Week 4 to now. It will be a chore for sure and Almost a dread but you have to push on . I can say alot of people going through head and neck cancer end of on the feeding tube for awhile. If He does it is not the end of the world but he should still try to use his swallowing ability when he can to keep those muscles working. Swallowing is a very complex process we all do on a daily basic and We all take for granted. Mouthcare is very important with fluoride toothpaste and mouth rinses for dry mouth. He can chew SUGARLESS gum to increase saliva and help clean teeth between brushing. Also, I put a good lotion twice a day on my neck which keep radiation burns to a minimum. Good luck to you and you husband . Overall I fell about 80% energy wise. He can do it!

@vickie1320, you might also appreciate hearing from @alpaca @clevyjam @fwpoole @nbkod7b and others who have shared in this related discussion:
- Trismus (lock jaw) after Head & Neck cancer treatment: What helps?
https://connect.mayoclinic.org/discussion/lockjaw-after-sinus-cancer-surgery/

Thank you Colleen, I will read them. John is continuing to eat and chew and swallow. He has a soar on his tongue that causes pain. We are learning how to prepare meals that don’t hurt. Thank you again, Vickie

Hi there. I got a recurrence of salivary duct cancer in 2021. This was my second time doing radiation in the same area. I can open my mouth about 1 1/2 cm.
I can still eat and drink most things but have to be careful and only put a very small amount of food for each bite. So for example, to eat a hamburger I would have to deconstruct it and eat a piece of the roll and then a piece of the burger.

I do stretches each day with a device called (gentle jaw). It’s painful but if I don’t stretch then it’s worse as my jaw will spasm etc.

I have severe tinnitus but if I use a hearing aid then it’s a little better. I have very little hearing in my right ear.

I have no pain with eating anymore so tell your husband that it will get much easier after about 6 months. My taste is not 100% but it’s pretty decent.

Hang in there