Trismus and Masseter Muscle

My husband had severe trismus and couldnt even fit a spoon in his mouth. The therabite  didn’t help him at all. His oral surgeon provided some relief thru surgery in June. While not perfect he can eat again. His mouth opening went from 3mm to 20mm and he can accept that. Im not sure where you live but we see Dr Roser at Emory in Atlanta.  Best wishes to you. 

stevenpepe said:

Hello. What kind of surgery

Hello. What kind of surgery did he have? I had radiation twice, so my neck and right side are severely affected. Not sure if I'm a candidate for more surgery. Therabite shows little progress and I feel the masseter muscle tightening every day.

So sorry you are having to deal with this complication.  I have no personal knowledge.  Googling surgical options out of curiousity, it appears a surgeon would have to evaluate specifics as there are multiple surgical options.  I did find this interesting read.  

https://oralcancerfoundation.org/complications/trismus/

Wishing you the best,

Crystal

Hi Steven

I developed this also and it confounded my doctors. It got a little better over time to the point I could deal with it but after 9 years I still have it to some lesser degree. I went through physical therapy which only mad the nerve involved more irritated so my therapist suggested that I stop and my oncologist and radiologist agreed. It seems a portion of the trigeminal nerve was involved and there was all kinds of suggestions from Botox, steriod injections, to surgery that were proposed. In each case there was a concern that they could make the situation worse by these treatments and that letting the nerve settle down over time would actually be a better option if I could tolerate the spasms. I decided to deal with it and everything worked out well until I went to a dentist who told me I developed an abcess in a molar on the radiated side and he pulled that tooth. Worst mistake of my life to allow that. I developed osteoradionecrosis from that tooth extraction which turned out to be in my mind, 10 times worst than any cancer treatment or complication I had before the incident. The spasms became so intense at that point that I was incapacitated and could do noting but sit and cry. I'm a tough guy with a high pain tolerance but this almost made me want to quit. Drugs couldn't touch the pain so I stopped taking them. I still suffer from this condition though it finally after 2 years is starting to settle down. Always consult with an oral surgeon experienced with cancer for your needs and not a general dentist. Everyone is different but maybe with time, your spasms will resolve also. A therapist can give you excercises to do to help with keeping you jaw flexible or consult an oral surgeon, but remember - Radiated tissue does not heal as well as normal tissue because the vascularity has been diminished by the radiation so your anatomy may have changed but definitely it has been compromised from the radiation. That's why there is hesitation to try things one normally would on healthy tissue as the effects may not have the desired results and may even do more harm.

Hope this helps

georgiasurfer said:

Husband had surgery

My husband had severe trismus and couldnt even fit a spoon in his mouth. The therabite  didn’t help him at all. His oral surgeon provided some relief thru surgery in June. While not perfect he can eat again. His mouth opening went from 3mm to 20mm and he can accept that. Im not sure where you live but we see Dr Roser at Emory in Atlanta.  Best wishes to you. 

Is your husband able to eat regular foods? Does he have an obturator? How big is his mouth opening this far out from the surgery?

radiationburn said:

trust us surgery

Is your husband able to eat regular foods? Does he have an obturator? How big is his mouth opening this far out from the surgery?

His mouth opening is about 30 mm now. Prior to surgery it was 3. 

CivilMatt said:

2 rounds sounds like enough

Hi Steven,

Glad to hear from you.  It sounds like you are having difficulty with opening your mouth?  It is a well-known fact (around here) that cancer does indeed suck big time. I don’t have any pertinent advice, I only wish you well.

Matt

Any suggestions to delayed reactions 2 yrs later, like bad.  Dry mouth No end.  Sodium deficiency so extra salt pills & food.  H orrible, try every morning to get up with I can do better today.  Just getting worse.  Drs don’t know why.  My family are cruel, what is your problem?  Not being able to swallow the same, starting to lose tast Buds now.  NO saliva, no thyroid, 2 yrs later.  All I hear is delayed treatment .....Chemo/ Rads, never witnessed this.  I started out great.  Gone down hill everyday.  Trying everything I did before, no help.  Just getting berated.  Losing my will to get up.  Becoming anti- social since can't eat much, so very tired all the time, losing hope what next.  help!!  cBD or what.  I’m so tired of fighting.  This is No life

Fireman said:

Trismus

Hi Steven

I developed this also and it confounded my doctors. It got a little better over time to the point I could deal with it but after 9 years I still have it to some lesser degree. I went through physical therapy which only mad the nerve involved more irritated so my therapist suggested that I stop and my oncologist and radiologist agreed. It seems a portion of the trigeminal nerve was involved and there was all kinds of suggestions from Botox, steriod injections, to surgery that were proposed. In each case there was a concern that they could make the situation worse by these treatments and that letting the nerve settle down over time would actually be a better option if I could tolerate the spasms. I decided to deal with it and everything worked out well until I went to a dentist who told me I developed an abcess in a molar on the radiated side and he pulled that tooth. Worst mistake of my life to allow that. I developed osteoradionecrosis from that tooth extraction which turned out to be in my mind, 10 times worst than any cancer treatment or complication I had before the incident. The spasms became so intense at that point that I was incapacitated and could do noting but sit and cry. I'm a tough guy with a high pain tolerance but this almost made me want to quit. Drugs couldn't touch the pain so I stopped taking them. I still suffer from this condition though it finally after 2 years is starting to settle down. Always consult with an oral surgeon experienced with cancer for your needs and not a general dentist. Everyone is different but maybe with time, your spasms will resolve also. A therapist can give you excercises to do to help with keeping you jaw flexible or consult an oral surgeon, but remember - Radiated tissue does not heal as well as normal tissue because the vascularity has been diminished by the radiation so your anatomy may have changed but definitely it has been compromised from the radiation. That's why there is hesitation to try things one normally would on healthy tissue as the effects may not have the desired results and may even do more harm.

Hope this helps

Please hang in, all We can do it sucky, not many options.  One day at a time.  I try but hard.  Family NOT supportive, making it harder, like they know everything, especially My husband.  Hell with you, you do this daily......couldn’t.  Can’t handle a headache.  But had a sore throat which I think he gave to Me.  His response, Did I run to a Dr for answers.....No just got better on its own.  Screw you, one your never sick, have not traveled down My path. So righteous.  Shut up ****!!!  Walk a mile in our shoes, we’ll talk. 

Drivingdaisy said:

Apology to all who posted

I apologize to anyone on this thread that read my posts.  On top of so many side effects, Menopause returned & I have been so cranky & a depressed witch.  Just wish I could feel somewhat normal again at least like in the beginning of getting to My new abi-normal.  Was so positive & upbeat 2 yrs ago.  Thank you, again I’m sorry for my outburst.  To Steve, please hang in there.  We both did well when we started unfortunately not as lucky down the road.  But We keep going, One hour at a Time is how I try & cope.  My fingers crossed things improve for you!  Hugs, Lisa

Lisa, my heart cries for what you are going through.  I'm sure your family is simply "trying" to help you think positive and they don't realize it simply hurts you.  I'm so sorry you have to go through this.  You are trying !!!  That is the key.  Don't give up.