Jaw problems after extensive radiation treatment

awsumtime

I have trismus from radiation

I have trismus from radiation to the head 2 times.  My mouth opens no more than 7/8 of an inch.  I have been doing stretching exercises for two years with no improvement.  Over a year ago I did 7 weeks of daily 2.5 hrs in a hyperbatic oxygen chamber which did nothing for me.  I have cramps in my jaw, throat and tongue.  I have great difficulty eating, swallowing, chewing, and speaking.  I also have neuropathy of my teeth.  It feels like someone is. Sticking a knife into my teeth.  Extreme numbness and electricity from the jaw up to the left eye. Sometimes the electrical sensation is so great it closes the eye.  So far we have not been able to control the pain or electricity.  Any suggestions?

debbiejeanne

awsumtime said:

I have trismus from radiation

I have trismus from radiation to the head 2 times.  My mouth opens no more than 7/8 of an inch.  I have been doing stretching exercises for two years with no improvement.  Over a year ago I did 7 weeks of daily 2.5 hrs in a hyperbatic oxygen chamber which did nothing for me.  I have cramps in my jaw, throat and tongue.  I have great difficulty eating, swallowing, chewing, and speaking.  I also have neuropathy of my teeth.  It feels like someone is. Sticking a knife into my teeth.  Extreme numbness and electricity from the jaw up to the left eye. Sometimes the electrical sensation is so great it closes the eye.  So far we have not been able to control the pain or electricity.  Any suggestions?

awsumtime, this is a very old

awsumtime, this is a very old thread you've responded to.  some may overlook it.  if i were you, i'd copy and paste what you typed above and start a new thread so you can get the replies you are looking for.  i'm sorry you are having all these problems.  i know there are several others who suffer with trismus and several who have gone thru the HBO chamber.  i hope you will start the new thread so members have the opportunity to reply to you.  good luck.

God bless you,

dj

laurabeau

Hondo said:

oral surgeon
Doctor is lining me up with an oral surgeon as he said a dentist can’t help me. Jaw will not open more then ½ I have tried a lot of things to get it to open more but each time it makes it worse.

Take care

Jaw opening

Exercises that my husband is doing are using the tongue depressors and gently stacking them. The exercises will loosen the jawfor a bit and then the jaw will clamp back down.  At MD Anderson they tell you to do this before it hurts. He  is still having intense pain nd he also has been hospitalized three times for sodium imbalance Hyponatremia. No one has figured out what is causing this but it causes seizures and can be fatal. This started when the jaw locked up. Ironic how the very treatment that saves your life gives you complications that cause all of us to have to research on our own to get the quality if life that is necessary. 

laurabeau

laurabeau

denistd said:

Jaw problems
I never had jaw problems, my mouth fully opens with no pain, my hyperbaric was for tooth extraction, however last Sunday I was eating some pizza and one of my front bottom teeth just broke off, no pain no gum bleeding, it just broke off at the gumline.

Teeth

my husband had that happen. The radiation kills the nerves, roots etc. and the teeth just fall out. They refuse to take my husband's teeth out. Frustrating because he has Trismus as well.

laurabeau

laurabeau

Hondo said:

oral surgeon
Doctor is lining me up with an oral surgeon as he said a dentist can’t help me. Jaw will not open more then ½ I have tried a lot of things to get it to open more but each time it makes it worse.

Take care

Specialist

The Dentist at MDA told us that there was no surgery that would work on this jaw. We go to the ENT Friday and thanks to this website maybe we can get a consult with the dental cancer specialits  at University in Jackson. I will let ya'll know if I get any information tha may help with this painful situation! 

 

laurabeau

Judy512

Feedback on my radiated jaw

I have not tapped into this site for awhile, and noticed your question was logged some time ago.  I too suffer from jaw issues as my jaw was radiated when I was 17.  I'm now 54 & as time goes by the joy of a radiated jaw does not get any better.

But what did help:  My jaw was fused by radiation...so had approx 1/4" opening between my teeth for almost 10 years until I got a condylectomy.  The condyle (rounded jaw joint) on the left side was removed to offer a wider opening which it did.  I will never be able to bite into an apple, but that's ok...it's good enough.

Because dental care was & continues to be a challenge as dentists and oral surgeons still have limited access, I had all my teeth extracted (top & bottom) on the left side.  It's not visibly noticable, just a chewing challenge.  I usually don't eat meals, but nibble on small things throughout the day.  In order to successfully have all the extractions, I underwent hyperbaric treatment before and after -- ensuring the compromised gum tissue healed well, which it did.

What my current issue and concern is, and I wonder if you have explored this is "jaw replacement".  I had 2 MRIs last year which revealed that my jaw has atrophied.  Delightful new, no doubt.  What seems to be (or so I've been told) is the fact that this can be a life-changing procedure.  I'm continuing to explore this for a couple of reasons.  The surgeon I spoke to planned to use titanium.  I need to investigate if this is reasonable to use -- need to check how long the titanium will stand up.  I heard from someone who had this done that it may only last 10 years.  10 years may seem like a long time, but the expense is crazy.  I was quoted $300-$400k.  I have exceptional insurance, but will still likely be left with $40k.  

So you have to weigh the life of surgery along with your willingness to pay a premium $$ (even if the surgery does not live up to your expectations).

I am currently gathering resources to use on my blog: judyryan.wordpress.com for childhood cancer survivors.  A pocket of truly unserved individuals.  To be honest, I don't need emotional support which so many organizations offer, I need sound "medical" advise, which seems to be lacking.

Hoping you have had some success since you last posted your condition.

Best,

Judy

 

 

 

 

 

debbiejeanne

Judy512 said:

Feedback on my radiated jaw

I have not tapped into this site for awhile, and noticed your question was logged some time ago.  I too suffer from jaw issues as my jaw was radiated when I was 17.  I'm now 54 & as time goes by the joy of a radiated jaw does not get any better.

But what did help:  My jaw was fused by radiation...so had approx 1/4" opening between my teeth for almost 10 years until I got a condylectomy.  The condyle (rounded jaw joint) on the left side was removed to offer a wider opening which it did.  I will never be able to bite into an apple, but that's ok...it's good enough.

Because dental care was & continues to be a challenge as dentists and oral surgeons still have limited access, I had all my teeth extracted (top & bottom) on the left side.  It's not visibly noticable, just a chewing challenge.  I usually don't eat meals, but nibble on small things throughout the day.  In order to successfully have all the extractions, I underwent hyperbaric treatment before and after -- ensuring the compromised gum tissue healed well, which it did.

What my current issue and concern is, and I wonder if you have explored this is "jaw replacement".  I had 2 MRIs last year which revealed that my jaw has atrophied.  Delightful new, no doubt.  What seems to be (or so I've been told) is the fact that this can be a life-changing procedure.  I'm continuing to explore this for a couple of reasons.  The surgeon I spoke to planned to use titanium.  I need to investigate if this is reasonable to use -- need to check how long the titanium will stand up.  I heard from someone who had this done that it may only last 10 years.  10 years may seem like a long time, but the expense is crazy.  I was quoted $300-$400k.  I have exceptional insurance, but will still likely be left with $40k.  

So you have to weigh the life of surgery along with your willingness to pay a premium $$ (even if the surgery does not live up to your expectations).

I am currently gathering resources to use on my blog: judyryan.wordpress.com for childhood cancer survivors.  A pocket of truly unserved individuals.  To be honest, I don't need emotional support which so many organizations offer, I need sound "medical" advise, which seems to be lacking.

Hoping you have had some success since you last posted your condition.

Best,

Judy

 

 

 

 

 

judy, i'm sorry you are

judy, i'm sorry you are facing this and i pray you find the right doctor for you.  there are a couple people here who had their jaw rebuilt.  one had titanium and another had bone graphed from their arm and another from their leg. i recommend you copy and paste your post into a new one as this one is old.  they will provide you with information from their experience.  i wish you the very best and please let us know what you decide.

God bless you,

dj

Hondo

Judy512 said:

Feedback on my radiated jaw

I have not tapped into this site for awhile, and noticed your question was logged some time ago.  I too suffer from jaw issues as my jaw was radiated when I was 17.  I'm now 54 & as time goes by the joy of a radiated jaw does not get any better.

But what did help:  My jaw was fused by radiation...so had approx 1/4" opening between my teeth for almost 10 years until I got a condylectomy.  The condyle (rounded jaw joint) on the left side was removed to offer a wider opening which it did.  I will never be able to bite into an apple, but that's ok...it's good enough.

Because dental care was & continues to be a challenge as dentists and oral surgeons still have limited access, I had all my teeth extracted (top & bottom) on the left side.  It's not visibly noticable, just a chewing challenge.  I usually don't eat meals, but nibble on small things throughout the day.  In order to successfully have all the extractions, I underwent hyperbaric treatment before and after -- ensuring the compromised gum tissue healed well, which it did.

What my current issue and concern is, and I wonder if you have explored this is "jaw replacement".  I had 2 MRIs last year which revealed that my jaw has atrophied.  Delightful new, no doubt.  What seems to be (or so I've been told) is the fact that this can be a life-changing procedure.  I'm continuing to explore this for a couple of reasons.  The surgeon I spoke to planned to use titanium.  I need to investigate if this is reasonable to use -- need to check how long the titanium will stand up.  I heard from someone who had this done that it may only last 10 years.  10 years may seem like a long time, but the expense is crazy.  I was quoted $300-$400k.  I have exceptional insurance, but will still likely be left with $40k.  

So you have to weigh the life of surgery along with your willingness to pay a premium $$ (even if the surgery does not live up to your expectations).

I am currently gathering resources to use on my blog: judyryan.wordpress.com for childhood cancer survivors.  A pocket of truly unserved individuals.  To be honest, I don't need emotional support which so many organizations offer, I need sound "medical" advise, which seems to be lacking.

Hoping you have had some success since you last posted your condition.

Best,

Judy

 

 

 

 

 

Hi Judy

I too live with only less then a ¼ inch opening in the jaw, can you tell me more about condylectomy, I don’t eat by the mouth anymore all in a PEG tube but need to get my mouth open to keep my teeth from rotting

 

Thanks

Hondo

hawk711

Hondo said:

Hi Judy

I too live with only less then a ¼ inch opening in the jaw, can you tell me more about condylectomy, I don’t eat by the mouth anymore all in a PEG tube but need to get my mouth open to keep my teeth from rotting

 

Thanks

Hondo

Hi Judy

I can give you insight in jaw replacement.  Had my left jaw replaced in free flap surgery.  PM me on this site and we can discuss.  

All the best

Steve

Mikemetz

Judy512 said:

Feedback on my radiated jaw

I have not tapped into this site for awhile, and noticed your question was logged some time ago.  I too suffer from jaw issues as my jaw was radiated when I was 17.  I'm now 54 & as time goes by the joy of a radiated jaw does not get any better.

But what did help:  My jaw was fused by radiation...so had approx 1/4" opening between my teeth for almost 10 years until I got a condylectomy.  The condyle (rounded jaw joint) on the left side was removed to offer a wider opening which it did.  I will never be able to bite into an apple, but that's ok...it's good enough.

Because dental care was & continues to be a challenge as dentists and oral surgeons still have limited access, I had all my teeth extracted (top & bottom) on the left side.  It's not visibly noticable, just a chewing challenge.  I usually don't eat meals, but nibble on small things throughout the day.  In order to successfully have all the extractions, I underwent hyperbaric treatment before and after -- ensuring the compromised gum tissue healed well, which it did.

What my current issue and concern is, and I wonder if you have explored this is "jaw replacement".  I had 2 MRIs last year which revealed that my jaw has atrophied.  Delightful new, no doubt.  What seems to be (or so I've been told) is the fact that this can be a life-changing procedure.  I'm continuing to explore this for a couple of reasons.  The surgeon I spoke to planned to use titanium.  I need to investigate if this is reasonable to use -- need to check how long the titanium will stand up.  I heard from someone who had this done that it may only last 10 years.  10 years may seem like a long time, but the expense is crazy.  I was quoted $300-$400k.  I have exceptional insurance, but will still likely be left with $40k.  

So you have to weigh the life of surgery along with your willingness to pay a premium $$ (even if the surgery does not live up to your expectations).

I am currently gathering resources to use on my blog: judyryan.wordpress.com for childhood cancer survivors.  A pocket of truly unserved individuals.  To be honest, I don't need emotional support which so many organizations offer, I need sound "medical" advise, which seems to be lacking.

Hoping you have had some success since you last posted your condition.

Best,

Judy

 

 

 

 

 

Had a resection in May of 2014
Judy,
I had a free flap resection of my left jaw in May of 2014. I'd be glad to offer any advice and information by Pmail, if you'd like to contact me.

Mike

Judy512

debbiejeanne said:

judy, i'm sorry you are

judy, i'm sorry you are facing this and i pray you find the right doctor for you.  there are a couple people here who had their jaw rebuilt.  one had titanium and another had bone graphed from their arm and another from their leg. i recommend you copy and paste your post into a new one as this one is old.  they will provide you with information from their experience.  i wish you the very best and please let us know what you decide.

God bless you,

dj

Thank you Debbie

Thank you for your kind feedback!  

Where do New Posts go?  Is it found under "Discussion Boards"?

Thank you again for your good wishes

Judy

 

Judy512

hawk711 said:

Hi Judy

I can give you insight in jaw replacement.  Had my left jaw replaced in free flap surgery.  PM me on this site and we can discuss.  

All the best

Steve

Jaw replacement...

Thank you Steve for your response!

I would be very interested to know who your doctor was & (if you are able to share) how much insurance covered.  And most of all...would you do it again. Also, were there any after effects you were not made aware of.  From what I understand you need to begin use of the jaw immediately following the surgery -- stretching and exercises in order to optomize function of your new jaw. I've used a Thera-bite appliance in the past to aid in the flexibility of my jaw.  I'm no stranger to pain, so pain is not as much an issue as knowing the procedure will be a success.  

Thank you again!

Judy

debbiejeanne

Judy512 said:

Thank you Debbie

Thank you for your kind feedback!  

Where do New Posts go?  Is it found under "Discussion Boards"?

Thank you again for your good wishes

Judy

 

yes.  look at the top of the

yes.  look at the top of the list, right under  where it says Head and Neck Cancer and you will see "post a new topic".  click it and type away.

God bless you,

dj

lws

Hondo said:

Hi MAV899
Sorry to hear this I am in the same boat with your brother I can’t open my jaw no more then a ½ inch, I tried a lot of things all it did was to cause more problems then it helped. I heard about the hyper-barric Oxygen treatment but don’t know anyone who tried it yet, I also heard that acupuncture may help, but it needs to be disease management acupuncture and not pain management acupuncture, I have not found anyone who can do this yet, but I am planning on trying it.

Please let me know what you find out my e-mail address is on my post
Take care & God bless

oral surgery

Hi and thank you for your post. I had jaw replacement six years ago-maximum radiation dosages and oh boy are the problems showing up. Lichen planus, difficulty opennng mouth, pain, etc. I was given months of hyper-baric and for me it did not help. Long costly procedure.

I would love to hear back from anyone with a similar situation.

Larry

lws

MJ70 said:

Your jaw problem ...
You should ask your Head and Neck surgeon to check out if you have osteo-radio-necrosist of the Jaw Bone...I did after five years......In our terms it means the radiation killed the circulation of the jaw bone..Its a big deal and needs a surgeon who does this type of surgery...I had my jaw bone replaced with my fibula from right leg.. fibulas are like tonsils or appendics .... we don't need them..I put mine off as long as i could but had to have it done after it got infected.. took twelve hours in the OR and six days in the Hospital... Things are great now but you should check it out...Mel

Thank You!

I had the very same operation in 2011. Now dealing woyth post surgery and radiation treatments.

 

Larry S

altoman

HYPERBARIC TREATMENT and CLOSED JAW

Hello,

I've done the hypo.  The purpose of hypo is to oxygenate the effected areas mostly for diabetes patients but for oral cancer survivors the treatment is meant to increase the blood to the bone so that it heals post surgery.  However, the rightside of my mandible is DEAD therefore the hypo serves no purpose.

That being said my mouth is now near zero (0)mm opening, virtually shut.  I'm seeking a surgeon who knows how to perform a masseter myotomy, to surgically cut the masseter muscles whose function is to close the mouth.  

If anyone knows of such please advise.

For chronic dry mouth I successfully use the XEROS dry mouth pump which you can read about here, http://drymouthpump.com

 

Thanks!

Al

 

 

 

ywhiteside

Jaw locked

I had nasal cancer 25 years ago.  Now my jaw is locked so tied I stopped breathing at night.  Can you email me at yolanda_whiteside@yahoo.com if you have information on treatment for tmj.

ywhiteside

Hondo said:

infofinder
I too have the cramping problems; it starts right under the jaw bone and gets so bad I can’t do anything. This is what I have found out; the reason for the pain is because there is a nerve that passages right there, when I tried to open the jaw too far it affects the nerve and I start with the pain. Do you have any problems yet with numbness in the tongue, I wake up sometimes and can’t speak because of the numbness, it only last for a little while but worries me if there are any long term affects.

If you mind my e-mail address is on my Post I would like to stay in contact with you as we seam to have the same side affects after treatment.

Take care and God bless you

Jaw locked

CCan you please let me now. I'm in bad shape.  I had nasal cancer 25 years ago.  My jaw been locked for 20 years now I can only open my jaw 1/2 inch. A year ago I had to get all my teeth was all crack in my gum and under my jaw I had 7 enlarged tumor and my doctor had to take them out no cancer. Be I need help I had a sleep study test done I stop breathing all night. Can you help me . Email address is yolanda_whiteside@yahoo.com. Thank you 

Dohna

D567 said:

radical neck surgery
I have squamous cell carcinoma on my lower jaw bone and the doctor will do the fibula flap surgery soon, worried about recovery time...

Hi, My sister is going in for the same surgery Aug 6,1018.  I want to know how your recovery is.  Hoping all is good. 

 

Thank You

Dohna

Dohna

Judy512 said:

Feedback on my radiated jaw

I have not tapped into this site for awhile, and noticed your question was logged some time ago.  I too suffer from jaw issues as my jaw was radiated when I was 17.  I'm now 54 & as time goes by the joy of a radiated jaw does not get any better.

But what did help:  My jaw was fused by radiation...so had approx 1/4" opening between my teeth for almost 10 years until I got a condylectomy.  The condyle (rounded jaw joint) on the left side was removed to offer a wider opening which it did.  I will never be able to bite into an apple, but that's ok...it's good enough.

Because dental care was & continues to be a challenge as dentists and oral surgeons still have limited access, I had all my teeth extracted (top & bottom) on the left side.  It's not visibly noticable, just a chewing challenge.  I usually don't eat meals, but nibble on small things throughout the day.  In order to successfully have all the extractions, I underwent hyperbaric treatment before and after -- ensuring the compromised gum tissue healed well, which it did.

What my current issue and concern is, and I wonder if you have explored this is "jaw replacement".  I had 2 MRIs last year which revealed that my jaw has atrophied.  Delightful new, no doubt.  What seems to be (or so I've been told) is the fact that this can be a life-changing procedure.  I'm continuing to explore this for a couple of reasons.  The surgeon I spoke to planned to use titanium.  I need to investigate if this is reasonable to use -- need to check how long the titanium will stand up.  I heard from someone who had this done that it may only last 10 years.  10 years may seem like a long time, but the expense is crazy.  I was quoted $300-$400k.  I have exceptional insurance, but will still likely be left with $40k.  

So you have to weigh the life of surgery along with your willingness to pay a premium $$ (even if the surgery does not live up to your expectations).

I am currently gathering resources to use on my blog: judyryan.wordpress.com for childhood cancer survivors.  A pocket of truly unserved individuals.  To be honest, I don't need emotional support which so many organizations offer, I need sound "medical" advise, which seems to be lacking.

Hoping you have had some success since you last posted your condition.

Best,

Judy

 

 

 

 

 

Jaw replacement

Hi Judy,  I was wondering if you had the Jaw replacement and if so how was it and how are you doing.  My sister is having it done in a couple weeks.  I'm trying to get as much info as I can.  Hope all went well if you did have the surgery. Take care and hope to hear back from you

 

Donna