Jaw problems after extensive radiation treatment

24

Comments

  • Hondo
    Hondo Member Posts: 6,636 Member
    johnlax38 said:

    Mav,
    I have the same

    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.

    3 fingers
    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
  • TRF649
    TRF649 Member Posts: 1
    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

    osteo-radio-necrosist
    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
  • NPCPaul
    NPCPaul Member Posts: 8
    johnlax38 said:

    Mav,
    I have the same

    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.

    jaw and neck excercises
    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.
  • D567
    D567 Member Posts: 2
    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

    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...
  • D567
    D567 Member Posts: 2
    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

    Fibula Free Flap surgery
    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
    MJ70 Member Posts: 75
    D567 said:

    Fibula Free Flap surgery
    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!

    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
    sweetgammy Member Posts: 24 Member
    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

    jawbone replacement
    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
    Hondo Member Posts: 6,636 Member

    jawbone replacement
    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???????

    Hi Sweetgammy

    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.
  • infofinder
    infofinder Member Posts: 4
    NPCPaul said:

    jaw and neck excercises
    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.

    healing with jaw and neck exercises
    @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
    Hondo Member Posts: 6,636 Member

    healing with jaw and neck exercises
    @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.

    Hi Paul

    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
    Mikemetz Member Posts: 465 Member
    Hondo said:

    Hi Paul

    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

    Decision points for jaw surgery
    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
  • madison7133
    madison7133 Member Posts: 2
    Jaw Problems
    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
    CajunEagle Member Posts: 408

    Jaw Problems
    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…

    Madison.......
    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
  • rudyray1
    rudyray1 Member Posts: 1
    Hondo said:

    Hi Paul

    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

    I have the same thing. I
    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
  • RogueHorse
    RogueHorse Member Posts: 4

    Jaw Problems
    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…

    Hyperbaric treatments
    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
    George_Baltimore Member Posts: 303

    Hyperbaric treatments
    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.

    Mountainous terrain
    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!
  • leonard53
    leonard53 Member Posts: 3
    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

    jaw motion

    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
    NJShore Member Posts: 429 Member
    leonard53 said:

    jaw motion

    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.

     

     

     

     

    As an advocate..

    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

  • ramcharger83
    ramcharger83 Member Posts: 3

    Mountainous terrain
    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!

    Light in the end of the tunnel

    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
    upwardcrayon5 Member Posts: 1
    I was diagnosed with Squamous cell carcinoma June 2012

    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