Help for trismus? How did you manage this post radiation side effect?

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.

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.

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

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.

@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.

@mimser, in addition to the helpful replies you've received, I'm also tagging @vickie1320 @clevyjam @jonesja and others who shared their experiences a few years ago in this related discussion and can update where they are today.
- Trismus (lock jaw) after Head & Neck cancer treatment: What helps?
https://connect.mayoclinic.org/discussion/lockjaw-after-sinus-cancer-surgery/
@mimser, I'm glad that your surgeon is continuing to look for solutions.

@mimser

Hi there i have severe trismus for 5 years now. At first there is a lot of pain and weird sounds but over time the pain goes. Im just under 2 fingers and can eat most things normally.

I started with stacking fudge sticks and then moved onto a device called gentle jaw. Be very careful if you stretch and feel pain you can make it spasm too much. Be gentle with the stretching.

Im sorry to report that all these years later im still at 2 fingers. I haven't stretched in years as I realised it wasn't going to change.

My teeth are good. I clean at dentist every few months and use waterpik as I cant get in to floss.
I've gotten used to it and I may eat slower and avoid things that take heavy chewing (like steak) but its really not bad after the pain etc subsides over time

Thank you so much for your response about trismis. I would be thrilled to get to a two finger stretch. It does hurt when I do the stretching exercises, and perhaps I was trying to do too much. I have the orapress mouth stretcher, but can't get it between my teeth to use right now. I'm using tongue depressers to stretch right now, and on a good day can barely get 3 between my teeth.
Thanks again for the info, and good luck to you!