Trismus (Lockjaw)

MichelleLee71
MichelleLee71 Member Posts: 13
edited February 2023 in Head and Neck Cancer #1
Hi everyone I'm new here and have soooo many questions. A little bit about my situation... Had surgery on May 24, 2012 to remove the tumor on my inner cheek, right neck dissection to remove lymph nodes and skin graft from my right thigh. 30 treatments of radiation and 3 treatments of Cisplatin. (Awful stuff.) My question is I developed trismus from my surgery and was wondering if I will be able to open my jaw all the way again. I've been to the speech therapist and am doing all the excersises she told me to do. It has gotten a little better but still not all the way. Very hard to get a spoonful or forkful of food in there. One other question I have is about the pain. I'm still having pain in my cheek, along my jawline and where the incision is. My ENT said everything looks okay and is healing great. Just was curious if the pain is normal and will that go away as well? Would love any input on my questions I have. Thanks so much!

Comments

  • Billie67
    Billie67 Member Posts: 898
    #2
    Michelle
    Having worked in the dental field for 16 years before I had kids I knew about trismus and I was careful to do my exercises throughout treatment. Even though I did them religiously I ended up with a slight case of it. Thru therapy and time it has gotten much better. Just keep doing them and you should be able to recover most if not all of your ability to open all the way. Ugh radiation...what wonderful things it brings to us!
    Good luck to you.
    Billie
  • blackswampboy
    blackswampboy Member Posts: 341
    #3
    pain and injury
    I have trismus too (didn't have surgery), and seemed to be making progress through exercises...
    have had minor throat pain pretty much straight through, but recently (about 3 weeks ago, roughly 4 months out from tx) woke up one morning with jaw swelling, increased pain, and worse trismus.
    oncologist was on two-week vacation, so I went to ENT. she found a lot of necrosis in throat and did a biopsy. biospy was negative for the portion of the necrosis that she could get at.
    oncologist came back, said the necrosis was normal and nothing to worry about. he thinks maybe the swelling and pain were because I injured the muscle with exercises. I didn't really buy that, but had no other explanation for setback.

    and last few days, I'm starting to feel better again. swelling and pain are down. so guess I've gotta go with injury.
    minor pain was my normal, until the little scare described above. that sure didn't seem normal.
    don't hurt yourself with exercises.
  • Vikeman10
    Vikeman10 Member Posts: 62
    #4
    Lockjaw
    I have had this since my surgery, chemo, and rad back in 1978. I did many exercises to try to help but never able to get it back open fully, just had to smash my big macs to eat. My most recent rad ending in July has tighten up my jaw to the point I can get a finger or two in mouth at the most. I still do exercises daily to try to help, so just have to take it a day at a time, and hope it loosens up.
    Randy
  • JKMDean
    JKMDean Member Posts: 13
    #5
    Me too
    I also have a hard time opening my jaw all the way. Sometimes it is better than others but I do exercises each day - open my mouth slowly as wide as I can and then close it. I think I will always deal with this. The other is the pain tingling in the side of my face near my incision. My surgeon had to cut the nerve that gives feeling to my ear and the nerves in my face were also somewhat damaged. I have no real feeling in that side of my face and none in my ear. However, when I touch or am touched on that side near the incision site, I could scream. It is still very sensitive to touch, almost like being scratch by an animal I would think. I think what you are experiencing is "normal" considering what you have been through. I hope it gets better for you!
  • darcybechtel
    darcybechtel Member Posts: 1 Member
    #6

    I had surgery for squamous cell carcinoma of the sinus cavity. 30 treatment of radiation. Wear a prosthetic called a obturator. Went to pt. For 2 years. Went from 5mm to 18mm. But my dentist and the guy said the opening is still not good enough. omg really. I need a new obturator its paid for. So I went to a oral surgeon and he did a coronoidectomy. Guess what im back to where I started. He then did 2 mouth stretching under sedation. This last one kicked my ****. Constant pain. Nothing helps. I dont know what to do anymore. The pain is getting the best of me. I was down to 2 pills a day and now im back to 6 or 8. I work so its really hard to put a smile on my face when im in so much pain. God bless you all that are going through this.

  • wbcgaruss
    wbcgaruss Member Posts: 2,464 Member
    #7

    Darcy, welcome to the CSN H&N forum.

    I am so sorry you are having pain issues. You have been through a lot like many of us on here and the end results are not always the best but it is what we are left dealing with. It's too bad the surgery didn't solve your situation. Sometimes it seems everything we try just doesn't work. I would say possibly get back with the surgeon or get a second opinion as to why you have pain now after the procedures you had. As far as mouth opening and trismus it is an issue with us H&N folks. As far as a mouth opening I don't think it ever gets back to pre-treatment level but we just try to get the most we can to be functional. I would recommend you get with a speech therapist for an evaluation, they deal with everything head and neck and have been a big help for me. Also check out the Superthread at the top of the H&N page loads of info.

    Wishing You the Best

    Take Care God Bless-Russ

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