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Jaw problems after extensive radiation treatment

MAV899
Posts: 2
Joined: Nov 2009

My brother was diagnosed with Squamous cell carcinoma in 2000. He was treated at Sloan Kettering by means of chemo and radiation,he did not choose to have the radical neck dissection or surgery. The treatments itself was very grueling and very intense at times where he would get radiation treatments three times a day. He actually got the most radiation they could give a person. Thank God, today he is cancer free but because of the extensive treatments he now has problems with his jaw, he can't open his mouth wide enough for the dentist to work on his teeth and some of his teeth are also effected by it. From my different research I have found that the treatment had restricted the blood flow to the jaw which now is a problem. Again in my research I have read that there is a treatment called "hyper-barric Oxygen treatment" which at this point I know my brother will try anything. He gets botox injections to which is supposed to help with the muscle spasms and pain, which they do, but of course when it wares off, he back to the spasms and pain. What I would like to know, is this the kind of treatment, hyper-barric oxygen the kind of treatment that he should look into further and will it help his problem. Again i realize not all treatments will help everyone but reading some of the comments by people who had this treatment, they seem pleased and it appeared to work for them. I hope I covered everything and if you need more info please let me know.

Hondo's picture
Hondo
Posts: 5789
Joined: Apr 2009

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

MAV899
Posts: 2
Joined: Nov 2009

Sorry for not getting back sooner, but things have been hectic. My brother also was going for acupuncture as well as the botax injections but they sooner or later will not work as your system gets used to it I guess. I heard that the hyperbarric oxygen treatment works and now he is looking for places that do it,. Its funny Sloan Kettering treated him for his head and neck cancer and my brohter received the most radiation that they can give a human being, well now they are finding out that there are complications such as the one he is dealing with now from this extent of treatment. Sometimes he would recieve radiation like three times a day. Anyway have you tried hyperbarric treatment at all? you can email me at donnatuytjens@yahoo.com

thanks

genep
Posts: 1
Joined: Dec 2010

I was treated with chemo and radiation for SCC of right tonsil and throat in 2001. Have been cancer free since. Radiation leaves a nasty trail. Along with usual side effects such as extremely dry mouth, tooth problems, I started experiencing extreme cramping in my jaw. My oncologist prescribed Quinine capsules which helped immensely. I have been taking them since with good results. I do have limited ability to open my mouth fully. Quinine was taken off the market last year, I think, except for treatment of malaria. It was also used for leg cramps as well. He prescribes Qualaquin now, which is a form of quinine. I take 324mg three times a day with good results. Without it, my jaw locks up and I have to use both hands to open my mouth. It has been a life saver for me.

Hondo's picture
Hondo
Posts: 5789
Joined: Apr 2009

First welcome here to CSN, and second thanks for the tip about Quinine I will look in to it.

Take care and please plan to stay

leonard53
Posts: 3
Joined: Jun 2009

What exactly transpired.  I had high dose rad7 years ago for throat cancer.  Al went well except last monday woke up and could open mouth no more than a1/2 inch.  No pain except if i trief to go past and pain would not allow.

Saw my general, he place me on antibiotics for sinus infection.  Pain anti inflamatory as well.  No improvement after three days said i should see my ent. They told me see tmj spevizlist, did that tmj specialist said not ymj. But ent shys away from dealing with limited motion, getti g a bad feeling about thix.

 

 

 

 

NJShore's picture
NJShore
Posts: 411
Joined: Nov 2012

As an advocate.. And caretaker, I'd say you met with a case of who's on first. But don't give up. Tenancity and squeaky wheels are what's needed when you are not being heard. If a doctor gives a referral, I ask that doctor what he/she thinks should be done, tests Etc. that should be done... And at times I suggest they order the test to confirm that we need the referral, and save my husband the delay in getting the support he obviously needs. They oftentimes will change tunes. 

sometimes we need to slow them down and get them to answer questions.. 

I  stop every doctor who blames symptoms on another doctors effort.. Such as a raw throat.. Was it chemo, was it rads?  I stop them in their tracks and say we really don't care what got us here, we aren't blaming anyone, do you think you can help us resolve it? Funny how doctors point fingers.. And annoying.

Good luck, and don't take no for an answer!

Kari

denistd's picture
denistd
Posts: 503
Joined: Apr 2009

Absolutely the HBO will work. I finished my HBO treatments 4 weeks ago. I needed to have a couple of teeth pulled but the Oncologist said that to do this I must have the HBO treatments. I had 20 consecutive days of two hours in the chamber, the teeth were pulled and I the had 10 consecutive days of 2hours in the chamber. I have suffered no consequences of the teeth extraction and the jaw and gums have strenghtened back to normal. It's not just the oxygen, the treatment simulates diving down to 114 feet so it's pressure too. Go for it, it is also a way to relax for 2 hours. Denis

Hondo's picture
Hondo
Posts: 5789
Joined: Apr 2009

Were you able to get anymore more movements in the Jaw from the HBO treatments? My Jaw will only open ½ inch and I think MAV899 brother is having the same problems, what I am afraid of is that they will break the Jaw bone trying to open my mouth and I will have a lot more problems and side affects to deal with.

infofinder
Posts: 4
Joined: Nov 2009

Its been almost a year since i had radiation theraphy for Nasopharynx carcinoma. I haven't been able open my jaw more than 1/2 inch same as MONDO. I have been having slight cramps on my jaw muscles since abt 6 months. About two months back it got worst and the cramps got stronger on the left jaw muscles and since last week even the right jaw muscles. Now if the sometimes if the cramps start i am not able to open my jaws at all. These cramps are so strong that sometimes i think my gums might bleed. I dont want to loose my teeth at a young age and want to find some kind of solution. My doctors first told me that they will inject brotox but today they told me it will be risky. Has anyone tried brotox injections and how effective is it and is it really a risk and will i be able to chew or eat normally after that.

Hondo's picture
Hondo
Posts: 5789
Joined: Apr 2009

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

infofinder
Posts: 4
Joined: Nov 2009

Sorry i didn't follow up with this list for sometime now. Well my problems with the jaw muscle got worst and just last week i was injected with Bortox so its little relaxed now. But this is for sure not a permanent treatment. I am also trying to find out which exercises could help better this situation. Last 2 month i tried acupunture and also physiotherapy but still they didnt help a bit. As you mentionend when i try to open my jaw more than 2 cms it starts to cramp. I believe now that it should be some nerve which leads to this problem. But what i dont understand is this problem didn't show up immediately afer radiation but after around 10-12 months.

Surely we will keep in touch by email too.

Take care.

Hondo's picture
Hondo
Posts: 5789
Joined: Apr 2009

I will PM you my e-mail address

infofinder
Posts: 4
Joined: Nov 2009

Did you also have jaw muscle cramps ? Also did you also have problems opening jaw ? If yes did it get better and normal after HBO treatments. How expensive is the HBO treatment in America ? Thanks for this valuable information.

JustOneMore
Posts: 2
Joined: Jan 2010

My husband has also had extensive radiation treatment two years ago this coming March. He has over the past 6+ months been dealing with the jaw problems. However, prior to dealing with any issues he had HBO treatments prior to dental work being done. Since those 40 HBO treatments the jaw problems have grown. He has had several bone spurs drilled, a tooth removed, and now there is an infection "somewhere" that is causing so much pain and swelling that they can't find out "where". He has been on antibiotic for 2 months and pain killers for 2+ months. My husband also can not open his mouth wide enough for the dentist to do any work and it makes it difficult for him to eat as well. The oral surgeon his now considering doing surgery on the external part of his jaw to make an incision in the gum tissue to place some antibiotic beads in the tissue to see if it can control the infections. We feel we are in the same boat with you with one paddle in the water.

PS....my husband was cured from the SCC (tonsil and lymph)...but with these issues could it now turn into a Jaw Cancer????

kkw62
Posts: 12
Joined: Jan 2010

I too would be interested if these issues are leading to another bout. My husband was diagnosed with SCC in April 08. He is currently doing the hyperbaric treatments and is on day 11 of 20 after which they intend to pull teeth and he also will endure 10 more treatments. We get mixed signals if the hyperbaric will help but we have decided at least we will know if it doesn't work and can never say we didn't try. He had a PET just after the holidays which was clean but that is when this jawbone issue was discovered. He now continues to have a nagging cough especially at night. Just don't want to overlook something nor panic about nothing!

MJ70
Posts: 62
Joined: Nov 2010

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

TRF649
Posts: 1
Joined: Apr 2011

I had radiation to my jaw six years ago and have been diagnosed with osteo-radio-necrosis. Apparently there is a fistula from the point of the damaged jaw bone which drains through an opening under my chin. I had the cancer surgery at the Mayo Hospital and they didn't recommend radiation but the therapist I went to see prior to the operation convinced my wife and I that it would be a good precaution. Unfortunately the outcome wasn't good. My doctors at Mayo want me to have the replacement surgery but frankly I have been putting it off for five years as the thought of being on a feeding tube again depresses me! My questions for you are: Did you have a series of infections or just one serious one? My doctor's have told me that it would be the same procedure and hospital time that you described. What I haven't heard is how the recovery goes. How long were you on the feeding tube and what else is involved in the recovery? Thanks in advance for your help.
Tom

D567
Posts: 2
Joined: Jun 2011

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

D567
Posts: 2
Joined: Jun 2011

Hello! Saw your comment on your surgery and was wondering how long it took for recovery. Looks like I will have the same type of surgery!

MJ70
Posts: 62
Joined: Nov 2010

I have not checked this discussion board for some time but decided to today...Saw your post dated today...Good timing ...
The recovery time for me was the six days in the Hospital and a few more days at home with my feeding tube through my nose which kept me home for obvious reasons.. I think it was a total of about 10 days before they took out the feeding tube on my first appt..... The time in the Hospital went so fast and i was in a walking boot which P.T. had me walking the next day... Besides being sore it was pretty painless for me... What surprised me was my eating after five years of finally getting back to almost normal abilities...I found it much harder to eat again and swallow like i had before....seems like i have to rinse my food down more than i use to...But that has become a new normal so just another day enjoying life ..I met a friend through a friend who had scc of the tongue on the same side as you at the same time i did seven years ago who is having the same osteo radio necrosis of the lower right mandible as you are.. Mine was the left side two years ago.. He is taking Hyper baric treatments now..and has lost most of his teeth on that side but might save his jaw bone...My Surgeons said they hooked up a good nerve but a mandible nerve and a fibula nerve aren't quite the same and it has not worked....some numbness on my left side...like coming out of the dentist but not nearly as bad...Walking on a leg with no fibula is also not a problem for me.. If it turns out like mine you will do just fine...Good Luck

sweetgammy's picture
sweetgammy
Posts: 20
Joined: Jul 2011

Hi! I have just joined this discussion board. I had no idea it existed. My surgeon wants to do a jawbone replacement. I am scared to death. Please...I need as much information as I can get aboutit! since you have had it done, please contact me by e-mail and share with me any knowledge you have. marianne2428@yahoo.com Thanks!!!!!

How do you find a surgeon whho is the best at jawbone replacement???????

Hondo's picture
Hondo
Posts: 5789
Joined: Apr 2009

Why do they want to replace your Jaw bone, is it damaged or infected. Please get a second opinion and from a major cancer institution before you make any discussion. I too have major Jaw problems but the last thing I will do is to replace my Jaw.

PS: Welcome to the family here on CSN.

MJ70
Posts: 62
Joined: Nov 2010

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

Hondo's picture
Hondo
Posts: 5789
Joined: Apr 2009

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

denistd's picture
denistd
Posts: 503
Joined: Apr 2009

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.

MJ70
Posts: 62
Joined: Nov 2010

At five years out (2009) I had to have a jaw replacement because i had radio-necrosis of the lower left mandible..in our terms it was radiation destroying the circulation in my jaw bone and it was a couple mouths from breaking ...i checked into the Hyper chamber but no one could give me a good answer if it would work..... I went ahead with the surgery and they used my fibula from my right leg to shape me a new jaw bone called the free fibula flap...Two years later things are just fine..I am retired and do all the things i have ever done and still keep pretty active..Gotta put up with all the issures we all go through...ie..dry mouth ,,taste, need water....need to exercise my swallowing muscles and jaw muscles .etc...

MJ70
Posts: 62
Joined: Nov 2010

At five years out (2009) I had to have a jaw replacement because i had radio-necrosis of the lower left mandible..in our terms it was radiation destroying the circulation in my jaw bone and it was a couple mouths from breaking ...i checked into the Hyper chamber but no one could give me a good answer if it would work..... I went ahead with the surgery and they used my fibula from my right leg to shape me a new jaw bone called the free fibula flap...Two years later things are just fine..I am retired and do all the things i have ever done and still keep pretty active..Gotta put up with all the issures we all go through...ie..dry mouth ,,taste, need water....need to exercise my swallowing muscles and jaw muscles .etc...

johnlax38's picture
johnlax38
Posts: 136
Joined: Aug 2010

Mav,

I have the same problem. My dental surgeon and my oncologist gave me exercises to do with my jaw which include stretching. It hurts but it helps. I can barely get three fingers in my mouth, when held vertically. Doc's told me average person can get 3-4 vertical fingers in their mouth. What he has is to be expected, he needs to push his doctors for informaiton as to how to stretch his jaw. I am 4-5mo post rads and I have to stretch every day or I can't even put a spoon of cereal in my mouth.

Hondo's picture
Hondo
Posts: 5789
Joined: Apr 2009

Keep exercising the Jaw everyday is the only way to keep it working. John 3 fingers is great I can’t get one finger in mine but I am working on it everyday

NPCPaul
Posts: 8
Joined: Mar 2011

stretching is key. Goto to the physical therapist and they will provide techniques to stretch and massage and push they body fluids away from the tightness areas. My ENT also advised me to to stretching exercise often. One good tip was to do a set of stretching every time you see a commercial when you are watching tv.

infofinder
Posts: 4
Joined: Nov 2009

@NPCPaul: do you mean streaching of the jaw ? Each time i try it the cramps get worser and the pain too.

This is my third year with the cramps and i still cant find any proper solution. The docs dont have a proper explanation why these cramps show up.

i am still in search of a solution which could solve these cramps.

Hondo's picture
Hondo
Posts: 5789
Joined: Apr 2009

Yes I know about the cramps I too get them if I overdo it, or reach just one place when trying to stretch. The key for me it to go easy and remember everything there is like bacon if you pull it too had it will brake and become tuffer.

Do you use a jaw device to work with if so what one are you using. I did the threbite and now I am using a Dynasplint, the Dynasplint is a lot easier to use but cost a lot.

Wishing you well
Hondo

Mikemetz's picture
Mikemetz
Posts: 345
Joined: Nov 2011

I have ORN in my left jaw, the radiation site. I have had one tooth extracted and have completed 40 hyperbaric oxygen treatments. I have a constant pain level of 2/3, which spikes to 6/7 sometimes. I have experienced some benefits from the HBO (e.g. the tissue in that area is softer), but the doctor is still seeing some dead bone in the socket of the extracted tooth. She is giving me two more weeks to see if this turns around, and if not, will recommend either scraping the dead bone until live tissue is found, or a jaw resectioning. Can any of you tell me what your doctor told you about if and when to do the oral surgery? I read that some of you waited several years to get it done, but some had it done right away. Any advice, or things I should ask my doctor about?
Mike

rudyray1
Posts: 1
Joined: Aug 2012

I have the same thing. I dont plan on getting any surgery. When Im laying in bed at night, i jam pop cycle sticks I have taped together between my teeth to strech the jaw. It helps open the mouth some and even helps with the cramping

good luck, Blake

madison7133
Posts: 2
Joined: Jul 2012

After recently addressing extensive dental issues, both my dentist and oral surgeon are concerned the problems are a result of extensive radiation treatments I received following a modified radical neck dissection. Here’s the kicker – I was 19 years old while a freshman in college when I had the cancer/surgery; I am 51 now – it was 32 years ago. I’d had metastatic lymphoma that spread from my left sub maxillary salivary gland – which was removed as well.
In addition to the ongoing tooth loss, there are two areas where necrotic bone is “floating” through the gum. It is happening in areas where there has been no tooth loss and the doctors are flummoxed except to theorize it is coming from my mandible because of the past radiation treatments – luckily, I’d had no chemo. I have no jaw pain or problems opening my mouth. During the surgery in 1980, I required transfusions contracting HCV (Hepatitis C). It wasn’t until 2005 that this was discovered and I underwent the standard chemotherapy which I’m happy to say was successful. However, it was immediately following that treatment I started with the dental issues. I’d had no problems with my teeth before.
While I can’t pin this to any one event, I was left with the typical “dry mouth” after the surgery, which in itself could cause these problems or the timing from the HCV chemo. Does this sound familiar to anyone? The expense to correct this will be enormous as it is not covered by insurance and a waste of time/money if there are blood supply problems to the jaw. Any ideas on how to proceed would be appreciated…

CajunEagle's picture
CajunEagle
Posts: 361
Joined: Oct 2009

In order to get a complete answer to your questions, you might want to start a separate thread and use your message that you posted here. Being stuck down at the bottom of someone else's thread, it might not be read by someone who can give an answer. Have you been on any Hyperbaric Oxygen treatment ???

Larry

RogueHorse
Posts: 4
Joined: Jul 2012

My husband finished treatment for Stage IV SCC (non HPV) Jan of 2011. He had both radiation (over 35 treatments and we were told he recieved the highest dose possible and 3 chemos of cisplatin) He has a multitude of issues. He also had the necrotic bone that exited out his gums, 4 pieces total. It started in Feb of 2012. We were lucky enough to see Dr. Doherty in Medford Oregon (Oral Surgeon). The plan was for my husband to have 20 treatments (dives) they lasted for about 1 hour at a time and he was put into 100% oxegyn. After 20 treatments, they planned to do a debridment of the jaw bone then have 10 more treatments. After 20 treatments, the results were so good that they cancelled the surgery and left him to finish up the 10 additional treatments. It's been 2 months without any additional bone floaters. It did not help with the incredibly dry mouth or with the hardening of his neck and tongue. Now diagnosed with lymphedema and seeming a massage therapist that is trying to get the lympatic fluids to drain. His dry mouth is caused by the radiation killing off his saliva glands. The cost was $2,000 per treatment, luckily insurance paid 80%. We seemed to have caught this early and so far it looks like the chamber worked for the necrosis. I keep coming to this site looking for some sort of guidance on what to expect because it seems like we get over one mountain just to find another one in front of us.

George_Baltimore's picture
George_Baltimore
Posts: 303
Joined: Jun 2009

You hit the nail on the head about the mountains. Is your husband on Medicare? Since 2009, I have had a total of 124 dives in the chamber. Medicare picked up 80%. All the rest was covered by my medi-gap insurance (BCBS). If you have medi-gap, you might want to inquire why they didn't cover the rest.

I had my first 80 done to try to help the rawness of my throat. My radiation was done in 2004. It helped some so I decided to do 40 more. When that didn't show any improvement, I stopped. In 2011, I developed mandible necrosis. I had replacement surgery in June of last year. The bone graft failed and they had to take it out. About two months later, they had to remove the titanium plate that they left in because a screw had worked loose. Now, I have a sort of swinging jaw. As far as I know, I am the only one currently on the board that the surgery didn't help. I too have lymphedema problems hence the compression mask.

I truly hope that the HBO treatments take care of your husband's necrosis problem. Good luck!

ramcharger83
Posts: 3
Joined: Oct 2011

I had Hyberbaric treatment 5 months ago for removal of wisdom teeth. I had nasopharygeal cancer in 1999 and they did not remove my wisdom teeth before treatment. I started having jaw pain and my dentist recommended the chamber treatment. I have had pretty good luck with the outcome of the chamber treatment but recently my front of my jaw is going numb and my dentist put me on antibotics for infection in the wisdom tooth hole. Does anybody have any advice on this issue?

upwardcrayon5
Posts: 1
Joined: Mar 2013

I had the neck dissection (July 2012), then 10 weeks (once a day, five days a week) radiation treatments. It's been about 20 weeks after radiation treatments ended. Had a problem with one of my teeth called radionecrosis (tissue destruction due to radiant energy) Now I'm going through Hyperbaric Oxygen Therapy today is my 22 out of 40 treatments. Since surgery have had a problems with chewing on the left side of my mouth. Surgery was done on right side of mouth. O2 therapy is making everything else heal quickly. Came here looking for information on jaw exercises

awsumtime
Posts: 11
Joined: Jan 2009

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's picture
debbiejeanne
Posts: 2428
Joined: Jan 2010

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

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