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

Hi RW, I wish I could say yes but I have had lockjaw for months and eat by tube too. Like you the exercises haven't worked but I have recently started using a Therabite system and it does seem to be very slowly helping, have you tried that? My speech therapist tells me I shouldn't expect to get a complete mouth opening but I am trying to stay positive. Good luck to you

Thank you for sharing. For me this is a huge life altering situation and I am surprised at how few people acknowledge they suffer from this. I am also frankly shocked at how lackadaisical the many medical consultants I have dealt with have been. With that off my chest, I did get a Therabite device. It seemed to help open my mouth some but after I removed it my mouth reverted back so I quit using it. Since you mentioned it I see they recommend it be used several times daily which is not what I did so am resuming use of it. Thank you for your encouragement. I wish you well. Please keep in touch if you make any progress and I will do the same.

Yes I use the Therabit 5 times for 30 seconds, 5 times a day. I had my daughter set reminders on my phone for me or I'm sure to forget.
I certainly agree that others either haven't had our jaw problems or it wasn't as bad.
I did do research though and if the Therabite doesn't work out there is a surgery that has a high percentage of success for trismus, doctor's did not even tell me about that option.
I dislike having a feeding tube but would probably have starved as right after the radiation treatments ended as I had some serious depression and lost a lot of weight. So am resigned to using it for now.
I hope things get better soon for you and yes will keep in touch.
Regards
Cheryl

I'm interested in knowing more about what surgery you are referring to. My oncologist told me there is a process where they can partially cut the muscles in the jaw. My understanding is that it is a one time deal, is not permanent, and has a low success rate. Also, there is a high risk of infection where they insert a tube in the throat in order to make the incisions. Again, that is my understanding from discussions with my oncologist. I have not researched it further as I am still below the minimum weight suggested for a man my height and don't want to tempt fate. I'd love to talk with someone who has had it done.

I have trismus as a result of lymphoma in my mouth. After chemo and radiation treatments I am not able to open my mouth, speak or swallow. The exercises I have been doing for several months haven't provided results and I am concerned this will be permanent. I am looking for help and anyone's experience in recovering from this.

@nbkod7b, there were several discussions about trismus related to head and neck cancer treatment where members were sharing tips. I have brought everyone together, like @lindst427 @alpaca @fwpoole @srm @clevyjam @conniejeffers @hnc67 and others into one central discussion here:
- Trismus (lock jaw) after Head & Neck cancer treatment: What helps? https://connect.mayoclinic.org/discussion/lockjaw-after-sinus-cancer-surgery/

Nbkod, I notice in your profile that trismus not only prevents you from being able to open your mouth, move your tongue, or eat or talk, it has also ruled out surgery as a treatment option because you couldn't open your mouth.

So am I understanding correctly that the location of the lymphoma itself has caused trismus? Did radiation make it worse? Or was the hope that treatments would help reduce the cancer to perhaps alleviate the locked jaw?

Thank you for bringing these discussions together. I was having trouble finding much on this topic which I still have trouble believing has occurred. I do not know the exact cause but it all goes back to the lymphoma in my mouth. I started having pain in my jaw and ear after I had a crown replaced so thought it was related to that. I saw several dentists with expertise in TMJ. Joint issues were ruled out. My mouth was slowly closing and I started having trouble speaking. That is when I was finally referred to an oncologist and tests came back with the cancer diagnosis. The expectation was that radiation would shrink the tumor and allow the jaw to open so that they could determine if surgery was necessary. With the radiation and subsequently chemo my mouth closed completely. I can get one tongue depressor between my upper and lower jaws by slowly working it in. I can then get a second one in with difficulty which is where I am now. I can't get a finger in my mouth between my teeth or move my tongue in order to do the related stretching exercises. That is why I am hopeful to hear from someone who found a way to recovery.

@inkbkod7b I really feel for you. Trismus has been a big problem for me since 2014 but I can get one forefinger plus between my top and bottom teeth and have been able to have surgery for various things. I was told by one max fax doctor that it was too late to get any improvement but I am making a renewed attempt. Someone told me that moving the mouth from side to side was an important exercise. I'm doing it a lot!
Apart from that is there any surgery that can be done? I have not been able to find any case studies after a quick Google although there is some mention of surgery. I wish you luck and understand how awful it must be.

Hi there,
I also suffer with trismus. I get a finger width. Recently I was told to use the tongue depressor to the side between my back teeth instead of in the middle. I tried it and it did make it open a bit more but I felt it slowly close down after. It has been a most frustrating effect along with the tinnitus. If I come across any new information I’ll share. Hang in there but I know it’s mind numbingly hard

First off, my speech therapist was a waste of time and co-pay! She had nothing to offer but common sense exercises for the jaw.
Anyway enough of that. After my radiation and chemotherapy I developed severe migraines (24/7) although my oncologist said nothing will relieve migraines resulting from treatment my family doctor insisted that we try. He put me on a muscle relaxer and though it didn’t help my migraine it did loosen my jaw! It made a world of difference for eating and speaking. Maybe that’s an option?