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

Posted by lindst427 @lindst427, May 14, 2021

Hi everyone. I’m new and here on behalf of my mother who was diagnosed with sinus cancer last year. She had surgery in November 2020 and they removed 4-5 upper teeth and took a bone out of her leg to rebuild jaw. She’s having complications- can’t open her mouth and isn’t getting any answers. Has anyone else gone through something like this?

Interested in more discussions like this? Go to the Head & Neck Cancer Support Group.

clevyjam | @clevyjam | Apr 16, 2022

I finished treatment for salivary duct recurrence. 2nd radiation of the same area after surgery. I’m finding it hard to cope with the lack of jaw opening and the tinnitus. I stretch each day with Gentle Jaw as without doing that it would be worse. The tinnitus is the harder of the two to live with. Any suggestions?

Amanda Roe | @amandajro | Apr 18, 2022

In reply to @clevyjam "I finished treatment for salivary duct recurrence. 2nd radiation of the same area after surgery. I’m..." + (show)

Hello @clevyjam and welcome to Mayo Clinic Connect. I can imagine dealing with both trismus and tinnitus can be very frustrating. Many of the connect members who have shared about their experiences with tinnitus are in the hearing loss group. If you're interested in connecting with others on tinnitus specifically, since you mentioned that being the harder of the two to live with, this would be a great discussion to start with:

- Controlling Tinnitus: What works for you?: https://connect.mayoclinic.org/discussion/tinnitus-control/

When did your tinnitus start?

clevyjam | @clevyjam | Apr 18, 2022

In reply to @amandajro "Hello @clevyjam and welcome to Mayo Clinic Connect. I can imagine dealing with both trismus and..." + (show)

Thank you. I’ll definitely check it out

Colleen Young, Connect Director | @colleenyoung | Apr 23, 2022

In reply to @clevyjam "Thank you. I’ll definitely check it out" + (show)

Hi @clevyjam, I'd like to introduce you to @sylviapf, whose husband also has salivary duct cancer. And @jtw96 as well.

@fwpoole @srm also talk about dealing with trismus.

Clevyjam, do you think that the tinnitus may be caused by a medication you're on? Have you questioned ototoxicity with your cancer team?

clevyjam | @clevyjam | Apr 23, 2022

In reply to @colleenyoung "Hi @clevyjam, I'd like to introduce you to @sylviapf, whose husband also has salivary duct cancer...." + (show)

I’m not on any medication but I was radiated twice in the same area and it be an about 3 weeks in and has been getting worse. Louder and more constant. The trismus would get worse without the stretching device I use throughout the day.

conniejeffers | @conniejeffers | Apr 28, 2022

In reply to @clevyjam "I finished treatment for salivary duct recurrence. 2nd radiation of the same area after surgery. I’m..." + (show)

So sorry about your trismus I had radiation for mouth cancer in 2018 never once did I learn I will never get my mouth open again I stretch before each meal one finger opening I am learning to
Live with it just glad to be alive good luck to you

clevyjam | @clevyjam | Apr 29, 2022

In reply to @conniejeffers "So sorry about your trismus I had radiation for mouth cancer in 2018 never once did..." + (show)

Wow I guess I should be grateful to be able to stretch to two. I thought it would get better but each day I have to stretch again. As you say I’m grateful to be alive. Cancer has been nipping at my heals since 28 and I’m now almost 58. Most days I’m grateful but on others I feel worn out. But it’s not a year yet since treatment so I’m giving myself until then to get my usual joy back

Colleen Young, Connect Director | @colleenyoung | May 8, 2022

In reply to @clevyjam "Wow I guess I should be grateful to be able to stretch to two. I thought..." + (show)

@clevyjam, you mention that cancer has been nipping at your heels since you were 28. Woah! Have you had different types of cancer?

clevyjam | @clevyjam | May 8, 2022

In reply to @colleenyoung "@clevyjam, you mention that cancer has been nipping at your heels since you were 28. Woah!..." + (show)

Hi yes I first had liver in 1993
Then recurrence in 1999 and 2003

Salivary duct in 2015, with recurrence in 2021

But truly this is the first time I’m having trouble with the effects. The trismus and tinnitus are tough

RW | @nbkod7b | Nov 27, 2022

I also can not open my mouth as a result of lymphoma in my mouth. I eat through a feeding tube. TMJ issues have been ruled out. The muscles in my jaw have tightened. I have worked with a therapist. The exercises haven't seen results. I'd like to know if anyone else with a similar situation has been able to restore normal function of their mouth.