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Help for trismis

Posted by mimser @mimser, Aug 9 1:48pm

Does anyone have any suggestions of how to manage trismis as a post radiation side effect? In Nov I underwent extensive surgery for SCC on my inside left cheek. Had 3 radiation treatments following and developed severe trismis after. I have been going to PT since Feb to try to remedy, and recently got the orapress jaw stretcher. My mouth is so tight it's difficult to even get that in, and 2 popsicle sticks is as much of a stretch as I can get. You can feel 2 fibrous bands inside my cheek which are no doubt causing a lot of the problem. Magic mouth wash helped me so much with mouth sores also. I'm having another PET/CT scan tomorrow just to make sure there's nothing else going on. I am a 78 y/o female who was very active before this devastating event. My husband has been my rock. Could not have made it without his help!

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jeffvalvassori | @jeffvalvassori | Aug 10 7:08am

I was originally not able to open enough to put the tip of my finger between my front teeth but after constant speech therapy and stretching exercises I am now able to stack two finger tips between them(measuring about 30-31 mm opening) consistently. It is Nowhere Near where I used to be but it’s definitely a whole lot better. Still trying to gain weight though and radiation did alot of damage to my teeth which is now another big issue and expensive one. I’m feeling like this might be the most I will be able to open my mouth. Hang in and keep doing your exercises as much as you can tolerate. I’m praying things will improve for you soon.

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mimser | @mimser | Aug 10 9:59am

Thank you so much for the encouragement, Jeff. I was only at 31 mm before starting this journey (I'm petite, so that was normal for me). I was at 20 before the radiation, so to even get back there would be a blessing. Will continue to work diligentally, and I really appreciate your prayers.

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hnc67 | @hnc67 | 1 day ago

I hear you all, at four years out from treatments Trismus has cost me all my teeth and the best I can open is maybe 20mm.
I do the 7-7-7 program with a Therabite daily along with the stretching exercises my therapist gave me.
She says what I'm doing now is trying to keep the amount of opening I have.
So, it's tube feeding for me with soft foods like yogurt, pudding and ice cream 🍨 treats.
Sure would be nice if there was something doctors could do for us, there is a surgery option but my doctor says the results don't last, the radiation therapy will cause the fibrosis to return...
No matter, I'm a 72 year old wife, grandmother, and great grandmother, our Lord has given me this life and I will always be grateful. Best regards to everyone

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Sue, Volunteer Mentor | @sepdvm | 13 hours ago

Hello @mimser. I had some facial therapy for a year right after my radiation/chemo because of facial nerve paralysis from the surgery. Weekly a very experienced OT would stretch tiny facial muscles and do fascial release and I always came out of the appointment looking better than when I arrived. One of the things she always did was put on a glove and massage muscles of mouth and cheek from inside and out, essentially pinching and stretching the tight bands that formed in my cheeks. I still do that myself because the stronger side of my face pulls more than the affected side, but there are tight bands in both. Fourteen years later, I am having fibrosis and muscle atrophy and this daily massage helps to release tightness and allow the muscles to work again. It helps to see what the facial muscles look like and where they are. There is a book called Facersise by Carol Maggio that has helped me with that. My trismus is minimal but would be worse if I gave up the massage.

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mimser | @mimser | 1 hour ago
In reply to @sepdvm "Hello @mimser. I had some facial therapy for a year right after my radiation/chemo because of..." + (show)
Profile picture for Sue, Volunteer Mentor @sepdvm

Hello @mimser. I had some facial therapy for a year right after my radiation/chemo because of facial nerve paralysis from the surgery. Weekly a very experienced OT would stretch tiny facial muscles and do fascial release and I always came out of the appointment looking better than when I arrived. One of the things she always did was put on a glove and massage muscles of mouth and cheek from inside and out, essentially pinching and stretching the tight bands that formed in my cheeks. I still do that myself because the stronger side of my face pulls more than the affected side, but there are tight bands in both. Fourteen years later, I am having fibrosis and muscle atrophy and this daily massage helps to release tightness and allow the muscles to work again. It helps to see what the facial muscles look like and where they are. There is a book called Facersise by Carol Maggio that has helped me with that. My trismus is minimal but would be worse if I gave up the massage.

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@sepdvm
Thanks for your input. I am going to PT twice weekly for stretching and strengthening exercises for my mouth. I recently got the prepress mouth stretcher, but can't open enough to get it in my mouth. My mouth pain has increased to the point that I had a PET and CT scan last week with inconclusive results. I saw my surgeon Friday, and he tried to do a needle biopsy on an area in my mouth that looks ulcerated, but was unable to do. So, he's taking
me to the OR to manually stretch my mouth so he can see what's going on.

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