Radiation cause trismus

OregonGreen Member Posts: 7 Member
edited March 13 in Head and Neck Cancer #1

Hi all I am a 68 year old lady who had surgery this time last year, my ENT surgeon had to stop though as tumor that they think started on my left tonsil cT4 N1 HPV was big and wrapped around my carotid artery.

So then underwent 7 weeks of radiation treatments 70 gy and 7 weeks of chemo Cisplatin. So far my scans have shown the tumor is shrinking, thank God.

What it is is that I have severe trismus I assume from the radiation, and can barely open my mouth 6 cc? been going through speech therapy and using a Therabite appliance for months now that isn't really helping.

My question is has anyone had a surgery to help their jaw open again? And if so how was the outcome??

I expect to be doing the stretching exercises for the rest of my life either way but am so very tired of not being able to really eat anything beyond soft foods like yogurt or applesauce etc. (it all still tastes yucky).

It can be so depressing to go to the grocery store and walk by the fresh fruit and veggies that I used to love to eat.

I just recently bought a blender, haven't ever used beyond making milk shakes when my kids were little so I need to figure out how to use it.

Thank God my nutritionist supplies me with packets of formula which has helped me to put some of the weight back on I lost.

Truly I just really dislike being dependent on this whole feeding tube/formula business.

Sorry to rattle on, but I figured if anyone knew about a successful surgery for trismus it would be someone who has experienced lockjaw too.

Anyway thank you for reading and God bless you all

And what is this navDX test? I've never heard of it


  • wbcgaruss
    wbcgaruss Member Posts: 1,973 Member

    Hello, Oregon, I am so sorry you are experiencing a difficult case of trismus.

    I can’t offer any more than what you are already doing with a speech therapist that I know of.

    I have heard of the operation that can help this situation but I have never known anyone who had it done.

    Some patients who are experiencing severe trismus may even undergo surgery to improve their jaw mobility. In these cases, a surgeon may perform a coronoidectomy procedure, which surgically removes the coronoid process of the mandible and thereby increases the jaw range of motion of the patient.

    As for the NavDX test, it is a fairly recent development and has been used by a couple of people on here.

    The NavDX test is A novel blood test that identifies genetic fingerprints of tumor-related viral DNA circulating through the body and accurately detects Human Papillomavirus (HPV)-related cancer months before traditional biopsy and scanning techniques, according to a three-year longitudinal study published in the Journal of Clinical Oncology.

    I will add a couple of links below.

    Wishing You the Best

    I hope you can find a solution to your problem.

    Take Care, God Bless-Russ