Jaw problems after extensive radiation treatment

MAV899
MAV899 Member Posts: 2
edited February 2023 in Head and Neck Cancer #1
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.
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Comments

  • Hondo
    Hondo Member Posts: 6,636 Member
    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
  • denistd
    denistd Member Posts: 597
    Hyper Baric treatment
    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
    Hondo Member Posts: 6,636 Member
    denistd said:

    Hyper Baric treatment
    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

    denistd
    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
    infofinder Member Posts: 4
    denistd said:

    Hyper Baric treatment
    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

    Jaw Muscle Cramps
    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.
  • infofinder
    infofinder Member Posts: 4
    denistd said:

    Hyper Baric treatment
    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

    @denistd
    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.
  • Hondo
    Hondo Member Posts: 6,636 Member

    Jaw Muscle Cramps
    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.

    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
  • JustOneMore
    JustOneMore Member Posts: 2
    Jaw Problems after extensive radiation treatment
    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
    kkw62 Member Posts: 12

    Jaw Problems after extensive radiation treatment
    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????

    I too would be interested if
    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!
  • Hondo
    Hondo Member Posts: 6,636 Member
    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
  • infofinder
    infofinder Member Posts: 4
    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

    @Hondo
    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
    Hondo Member Posts: 6,636 Member

    @Hondo
    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.

    Jaw problems
    I will PM you my e-mail address
  • denistd
    denistd Member Posts: 597
    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 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.
  • MAV899
    MAV899 Member Posts: 2
    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 Problems
    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
    genep Member Posts: 1
    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 cramps
    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
    Hondo Member Posts: 6,636 Member
    genep said:

    jaw cramps
    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.

    Hi genep
    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
  • MJ70
    MJ70 Member Posts: 75
    Jaw Problems
    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
    MJ70 Member Posts: 75
    Jaw Problems
    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
    johnlax38 Member Posts: 136
    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.
  • MJ70
    MJ70 Member Posts: 75

    Jaw Problems after extensive radiation treatment
    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????

    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
  • MJ70
    MJ70 Member Posts: 75

    Jaw Problems after extensive radiation treatment
    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????

    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