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?

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After radiation I had to have a tracheotomy put in my throat ended up closing to were I can never swallow even a sip of water again for the rest of my life I have to eat from a stomach feeding tube they can’t operate due to the surgeons saying my throat will tear and I will die I don’t understand how I was given 33 radiation treatments the same as a 250 lb man when I was 110 lbs , I will pray for your mother and wonder what must have gone wrong in her case prayers you find answers

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Hi @lindst427 and welcome. @emmie86 and @alpaca may have some ideas to help your mother.

Lind, have you and your mom considered getting a second opinion? Is she eating through a trach? What suggestions has her team offered to help with mobility of her jaw?

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Hi @lindst427 It's not uncommon for this "trismus" to occur after head and neck surgery or radiation. I have it myself but can open my mouth just enough to eat and have dental treatment – it's tricky though. There are stretching exercises but of course I don't know you mother's problem exactly. I think a speech language pathologist/therapist should be able to help her with this.
It's so disappointing when side effects like this occur. I hope you can get some answers soon.

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I’ve inoperable HPV 16 carcinoma at the base of tongue, T1, N0, M0. Ive been through one week of Carboplatin/5-FU chemo and 7 radiation sessions so far. I’m starting to feel like I’m developing lock jaw. Its very painful when I first try to eat/work my jaw and difficult to work through meals. My lower mandible near the joints is also quite tender. Has anyone else experienced this? Especially so early in the treatment.

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@fwpoole

I’ve inoperable HPV 16 carcinoma at the base of tongue, T1, N0, M0. Ive been through one week of Carboplatin/5-FU chemo and 7 radiation sessions so far. I’m starting to feel like I’m developing lock jaw. Its very painful when I first try to eat/work my jaw and difficult to work through meals. My lower mandible near the joints is also quite tender. Has anyone else experienced this? Especially so early in the treatment.

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Hello @fwpoole, While we wait for other members with experience share suggestions they may have, I'm wondering if this older article that sounds similar to the problems you are having might be helpful.

"Following radiotherapy, trismus results mainly due to fibrosis of muscles of mastication. This fibrosis is not apparent immediately following radiation treatment but occurs progressively as mucositis subsides. Severity of trismus is dependent on the radiation source, dose and number of fields radiated." — Management of trismus following radiation therapy by cost-effective approach: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4543707/

Are you able to discuss your symptoms with your doctor or care team to see if they may have some suggestions?

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@fwpoole

I’ve inoperable HPV 16 carcinoma at the base of tongue, T1, N0, M0. Ive been through one week of Carboplatin/5-FU chemo and 7 radiation sessions so far. I’m starting to feel like I’m developing lock jaw. Its very painful when I first try to eat/work my jaw and difficult to work through meals. My lower mandible near the joints is also quite tender. Has anyone else experienced this? Especially so early in the treatment.

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Let me bring @mindyt @srm @rwdow @denisebriggs and @jeffk into this discussion to see if they have any experience with radiation and the feeling of lock jaw.

@fwpoole, have you considered asking for a PT consult? I wonder if they could give you stretching exercises to help.

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@fwpoole

I’ve inoperable HPV 16 carcinoma at the base of tongue, T1, N0, M0. Ive been through one week of Carboplatin/5-FU chemo and 7 radiation sessions so far. I’m starting to feel like I’m developing lock jaw. Its very painful when I first try to eat/work my jaw and difficult to work through meals. My lower mandible near the joints is also quite tender. Has anyone else experienced this? Especially so early in the treatment.

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I just discussed this with my Radiology Oncologist. His comment is “its going to get worse” and he says most people need narcotics in order to get through treatment. This was never discussed before starting treatment and I do not take narcotics for anything. Do others end up on narcotics for this? Seems extreme given my diagnosis.

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@fwpoole

I’ve inoperable HPV 16 carcinoma at the base of tongue, T1, N0, M0. Ive been through one week of Carboplatin/5-FU chemo and 7 radiation sessions so far. I’m starting to feel like I’m developing lock jaw. Its very painful when I first try to eat/work my jaw and difficult to work through meals. My lower mandible near the joints is also quite tender. Has anyone else experienced this? Especially so early in the treatment.

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Hi @fwpoole
I started experiencing stiffness in my jaw about mid treatment. Nothing that resembled lockjaw. I’m 4 months post treatment and still have stiffness in my jaw. It’s been manageable throughout but I was, and still am very diligent with my jaw exercises. I find if I don’t keep up with them on a daily basis it tightens up. My jaw did lock once but it was during my exercises whereas I was being a little over aggressive while doing them. I have resumed my neck exercises as well. Over the past few weeks I have noticed my neck becoming more sore and stiff. I suppose these are exercises that may need to be done for years to come.
As far as narcotics go, I was the same as you. I was on no medication at all pre-treatment and don’t like taking drugs. However, I soon learned how important pain management is during treatment and for a while post treatment. It’s half the battle. I am no longer on narcotics. When I was hospitalized for a period during treatment they increased the narcotics to a very high level. I was concerned about the withdrawal when the time came to get off them. Even though I did experience some withdrawal symptoms, it wasn’t too bad getting off of them. Narcotics used properly and for the right reasons are almost a necessity while going through this difficult time. In saying that, I am aware of others that were able to manage their pain with Tylenol. I did not want to take the drugs so I held off as long as possible. In hindsight, I should have agreed to start taking them sooner. This journey is emotionally and physically challenging, anything you can do to make it easier on yourself is worth it. No matter what, it won’t be easy. Listen to the professionals. I didn’t at first and paid the price. One example was my feeding tube. I was determined not to give in. I wanted to be one of the minority that would get through the entire process without that need. Once again, in hindsight, I wish I would have listened and allowed them to put the feeding tube in sooner. That would have saved me from a weeklong stay in the hospital.
Stay strong and do whatever it takes to make life easier for yourself.

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@fwpoole

I’ve inoperable HPV 16 carcinoma at the base of tongue, T1, N0, M0. Ive been through one week of Carboplatin/5-FU chemo and 7 radiation sessions so far. I’m starting to feel like I’m developing lock jaw. Its very painful when I first try to eat/work my jaw and difficult to work through meals. My lower mandible near the joints is also quite tender. Has anyone else experienced this? Especially so early in the treatment.

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Thanks @srm for the words of encouragement. At this point (2 weeks in) the stiffness is still manageable with stretching.

However, since my last treatment on Friday, my throat is on fire. Feels like I have strep throat, at the back of my throat, not base of my tongue where the tumor is. I dont know what’s normal or what to expect anymore but none of the previous rounds of radiation has left me with this much, or this sort of burning pain. Feels like the radiation missed its mark. Is this something anyone else has experienced?

@mindyt @rwdow @denisebriggs @jeffk ??

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@fwpoole

Thanks @srm for the words of encouragement. At this point (2 weeks in) the stiffness is still manageable with stretching.

However, since my last treatment on Friday, my throat is on fire. Feels like I have strep throat, at the back of my throat, not base of my tongue where the tumor is. I dont know what’s normal or what to expect anymore but none of the previous rounds of radiation has left me with this much, or this sort of burning pain. Feels like the radiation missed its mark. Is this something anyone else has experienced?

@mindyt @rwdow @denisebriggs @jeffk ??

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Hi @fwpoole
The one thing that was hard for me to learn is that everyone is different when it comes to the effects of radiation and/or chemo therapy.
That being said, the burning in the back of my throat was the main reason I was put on opioids. I originally described it as burning pain. It then escalated to what I referred to as the feeling of swallowing razor blades when I would drink my protein shakes (I was on liquids by then). This was the main reason I was put on opioids. My experience ended up being what I would call shifting pain. The burning then moved over to the left side of my throat for about 8 weeks. It also felt like I had another tumour growing on my left side. (my tumour was on the right side). Then about 6 weeks ago the pain shifted to the right side of my throat in which it still remains. I no longer need to freeze with lidocaine (pink lady) to drink my shakes or eat some soft foods. I now manage pain with magic mouthwash (Akabutus) and sometimes a couple of Tylenol.
So to answer your question, (based upon my experience only) is that this burning pain is normal. I can’t say how bad it will get for you but don’t be too surprised if it gets worse. However, keep in mind that it does get better. It just doesn’t happen overnight. As previously mentioned, do whatever you need to do to look after yourself and reduce the pain.

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