Trismus and Masseter Muscle

stevenpepe

Hi All,

After two rounds of radiation, the second to my right neck just under the mandible, I've developed trismus related to inflammation of the masseter muscle. That's the large cheek muscle just in front of your jaw joint. Feels like a ball to most. Has anyone experienced this? If so, was there a remedy for the tightness and limited range of motion. Cancer sucks!

CivilMatt

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

georgiasurfer

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. 

stevenpepe

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. 

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.

caregiver wife

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.

Trismus

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

georgiasurfer

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.

Surgery
I’m not sure the technical term but basically cut the lower jaw bone on both sides to release that muscle. His was frozen solid from radiation and afterward Docs said no amount of Therabite would have helped. It worked so well he initially couldn’t close his mouth at all. His jaw had popped out of socket. After fixing that glitch he can open to about 20mm. His upper and Lower jaw isn’t quite aligned properly but his quality of life is so much better than prior to surgery. Good luck. Hopefully you can get some relief. It’s horrible.

Fireman

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

stevenpepe

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

Thanks fireman. That

Thanks fireman. That information is very helpful

radiationburn

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. 

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?

georgiasurfer

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?

Yes

Yes he can eat mostly normal foods. Still has trouble with some meats. He does not have an obtuator any longer. He did before the surgery where they did forear free flap to cover defect. The problem he has now is his jaw alignment is off so he does need a denture type device that he clips on his teeth while eating only. Trismus is a terrible side eff. 

georgiasurfer

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?

Mouth opening

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

mehrdad357

stevenpepe said:

Thanks fireman. That

Thanks fireman. That information is very helpful

An important question not related to this thread of conversation

Hello Steven,

My name is Mehrdad and userid is mehrdad357 and a member told me that you had recurrence of

cancer like I do. If this is correct please read on, if not just forget about it.

My Radiation Oncologist called me on 8/2/18 and told me that my cancer has recurred based on result of PET CT scan I had on 8/1/18.

He asked me to sit tight, and he is putting a lot of efforts trying to reach a head and neck surgeon that he tursts for a biopsy. All of these

Docs are in Stanford. He also told me my options are : Surgery (if operable) followed by Chemotherapy. when I asked what about radiation therapy he

said that does not work on a recurring H & N cancer. he said the cancer has spead to 1 lymph node.

My first Cancer:

I was diagnosed with cancer of Right side of Base the tongue on  August 16 or 17 2016. Stage 4b. I had no symptoms back then, only lymph nodes were swollen.

Treatment started about September 26 or so 2016. with chemo (Erbitux) and radiation. treatment ended on November 14 2016. My radiation oncologist and ENT specialist
have been doing follow up in the following manner.

Radation Oncologiist:  February 2017, May 2017, November 2017, February 2018, May 2018 and finally July 24 2017.

ENT:   March 2017, September 2017,  April 2018.

Prior to all the follow ups of radiation oncologist I had a CT scan of the neck and lung.

Symptoms of recurrence: On about July 9 2018, I started having a mild pain in the right side of my throat upon waking up and a couple hours after waking up and in

the middle of night when I would go to bathroom. in about 1 week, approximately by July 16, the pain was noticeable all the time but still at its worse upon waking up and

in the night, cause thoat was super dry. I saw him and my Ent both on July 24 2018 and both of them did a thorough laryngoscopy, but coud not see anything abnormal.

The oncologist ordered a PET scan on 8/1/18 and he got the results 8/2/18 and called me to tell me.

He said this time is on the right tonsil, and distance between the site of Primary cancer and right tonsil is only 1 cm and therefore it is a recurrence. He said 20% of the times radtion

does not kill all the cancerous cells, and those that survive radition (like the ones I have) are very aggressive. He said he cannot yet categorize the stage of cancer (after biopsy), but he said

it is certainly not as advanced as the original yet, but it is more aggressive that is it speads faster than the original.

If you have had a reccurence, I would greatly appreciate to hear from you.

Thanks

Mehrdad

Drivingdaisy

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

Hey 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

Drivingdaisy

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.

Trimisus

so sorry for you Steve.  Like Me you started out well & went down hill.  Sucks.  Hope family is supportive, mine isn’t.  makes every day harder.  Hang in Know you can beat this too.  Thinking of you.  Hugs from FLA

Drivingdaisy

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

Going down hill

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

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

momall25ofu

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

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.

katlou

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

emotional support

Lisa,  I read your post a couple of weeks ago and meant to respond.  We all need emotional support and a place to vent when we are going through tough times.  I understand your hurt because I don't get a lot of support from my family either.  What you are going through is very difficult and people who haven't been down that path just don't understand what it is like emotionally.  I turn to close friends when I need emotional support.  Do you have any close friends that could be there for you to talk about what you are going through?  If they are like my friends you will feel very supported.  Hang in there.