jaw bone replacement surgery

whr0714
whr0714 Member Posts: 1
edited March 2014 in Head and Neck Cancer #1
I had tonsil cancer in February of 2002 and as a result doctors removed my tonsils. Then, although my cancer was, as the doctors put it 99% gone, was advised to have chemo and radiation as a precaution. The radiation, a six week, daily treatment has damaged my jaw bone resulting in excessive bone loss and removal of 3 teeth on the lower left jaw bone. Now, I am in constant pain and can no longer open my mouth more than a half inch or so. The pain is chronic and take morphine daily. The only thing left to do is have my jaw bone replaced by using the small bone in my leg. I am only 54 years old and feel I could handle any operation well enough (but who wants to). My questions and concerns are many, but I mainly would like to know if any one has had this proceedure and could offer any advice or alternative solutions. I will have to do something soon because the pain and the drug use has gone far enough, I would be fine living with the condition if I could just stop the pain.
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Comments

  • loveh20
    loveh20 Member Posts: 1
    #2
    Hi - if you don't already belong, you might check out the discussion groups on www.oralcancerfoundation.org. There are many, many people there who have had tonsil and tongue cancer and several have had jaw replacement surgery. They may be able to answer your questions.
  • PattyNC
    PattyNC Member Posts: 65
    #3
    my brother will be needing jaw bone replacement
    I joined this site back in 2006 when my brother was diagnosed with head & neck squamous cell cancer of occult origin . Mikey is 52 & yesterday he had a PET and the good news it showed NO cancer. However, the doctor told me my brother's jaw bone loss is severe & will require removal of dead bone, etc. He said they would not do the surgery for my brother unless he stops smoking (which he has continued to smoke since his first diagnosis). I see the other post mentioning site oralcancerfoundation.org so I will probably join that site too. Looking for input from those who have undergone this procedure so I can support my brother in his journey to stop smoking & make a full recovery.
  • Hondo
    Hondo Member Posts: 6,636 Member
    #4
    loveh20 said:

    Hi - if you don't already belong, you might check out the discussion groups on www.oralcancerfoundation.org. There are many, many people there who have had tonsil and tongue cancer and several have had jaw replacement surgery. They may be able to answer your questions.

    Loveh20


    Thanks for sharing the link, I might be looking at Jaw bone replacement in the future and need to start finding more about it now.
  • newbride
    newbride Member Posts: 142
    #5
    Jaw Replacement
    My husband had his entire upper jaw removed and reconstructed from bone in his leg as well. The surgery went well and you can hardly tell his jaw was reconstructed. He isn't in any pain.

    Unfortunately, the surgery and radiation/chemo didn't work to kill his tumor and it is still growing aggressively.
  • thegirlfriend
    thegirlfriend Member Posts: 142
    #6
    newbride said:

    Jaw Replacement
    My husband had his entire upper jaw removed and reconstructed from bone in his leg as well. The surgery went well and you can hardly tell his jaw was reconstructed. He isn't in any pain.

    Unfortunately, the surgery and radiation/chemo didn't work to kill his tumor and it is still growing aggressively.

    how are you?
    you dont post as much as you were. Just wondered how things are going with you?

    thegirlfriend
  • newbride
    newbride Member Posts: 142
    #7
    thegirlfriend said:

    how are you?
    you dont post as much as you were. Just wondered how things are going with you?

    thegirlfriend

    Thanks
    Thanks for noticing, missing me. Things have been rough here. 9/29 my husband had a CT done and on 10/1 we were told none of the aggressive treatment he had worked. He was given an option of additional surgery which would require removing all bone from his face under the eyesockets and complete reconstruction - the doctors said doing this only gives him a 10% chance of being cured. He has decided he does not want the surgery. Honestly when he asked the doctor what the doctor would do in his shoes the response was "from an ethical and moral point of view I don't know if I should encourage you to do this, but from a medical point of view if there is 1% chance you should fight for it".
    I think he made the right decision and we can live the rest of his days pain free.
  • thegirlfriend
    thegirlfriend Member Posts: 142
    #8
    newbride said:

    Thanks
    Thanks for noticing, missing me. Things have been rough here. 9/29 my husband had a CT done and on 10/1 we were told none of the aggressive treatment he had worked. He was given an option of additional surgery which would require removing all bone from his face under the eyesockets and complete reconstruction - the doctors said doing this only gives him a 10% chance of being cured. He has decided he does not want the surgery. Honestly when he asked the doctor what the doctor would do in his shoes the response was "from an ethical and moral point of view I don't know if I should encourage you to do this, but from a medical point of view if there is 1% chance you should fight for it".
    I think he made the right decision and we can live the rest of his days pain free.

    newbride
    omg, Im so sorry you are having such a rough time of it. Its a rotten place to be in.
    I dont really have many words that will make you feel any different than you are feeling right now. How are you both with each other now regarding talking about plans and whatnot?
  • kurt2874
    kurt2874 Member Posts: 1
    #9
    Jaw
    Hi,
    My name is Kurt and if it was not for your tonsil cancer, mine was on my tongue, everything else is exactly the same. I had cancer 3 yrs ago and am going through this jaw thing now. I am not sure what to do. I have surgery scheduled for Nov. but am skeptical if this is going to solve my problem. I really do not want to endure this surgery if I don't have to. I can open my mouth about 3/4 of an inch and eat things 3/4 of an inch or thinner. That is getting pretty tiresome. My lower left jaw is in constant agony and I am thankful to be cancer free. I guess I am trying to find out has anyone gone through this lower left jaw replacement surgery and can give me or whr0714 any advice?
  • fisrpotpe
    fisrpotpe Member Posts: 1,349 Member
    #10
    Two
    I have watched two of my friends in our local head and neck cancer support group have their jaw replaced. Both have recovered and doing very well. It is not easy that is for sure. But I can saw after talking to both of them that the surgery is far easier than going thru radiation and chemo.

    FYI, I am 14 years post treatment and will some day as the long term side effects catch up I believe do to my teeth being so bad that at some point I will have to have the surgery. There will be you question I will feel positive about the results. I too am 53 years old and look forward to many more.

    John

    Oh ya, I so look forward to the day with out pain.
  • Buddy1020
    Buddy1020 Member Posts: 5
    #11
    kurt2874 said:

    Jaw
    Hi,
    My name is Kurt and if it was not for your tonsil cancer, mine was on my tongue, everything else is exactly the same. I had cancer 3 yrs ago and am going through this jaw thing now. I am not sure what to do. I have surgery scheduled for Nov. but am skeptical if this is going to solve my problem. I really do not want to endure this surgery if I don't have to. I can open my mouth about 3/4 of an inch and eat things 3/4 of an inch or thinner. That is getting pretty tiresome. My lower left jaw is in constant agony and I am thankful to be cancer free. I guess I am trying to find out has anyone gone through this lower left jaw replacement surgery and can give me or whr0714 any advice?

    Surgery Tuesday December 21st
    Kurt, Please tell me how you are doing now. Read my post. I'm scared out of my mind. IF you give me your email I'll send you a current photo for you the way I look right now. I hope you'll respond.
  • sweetgammy
    sweetgammy Member Posts: 24 Member
    #12
    jawbone replacement
    Hello!
    I too need to have a jawbone replacement and like you have lots of pain asociated with infection and bone death. I have been putting it off for about a year now because I can't bear the thought of another hospital stay as well as the danger of having it not take because of being radiated twice. I can tell you however that it is critical to choose the most competent plastic surgeon to do the job. There is a Dr. Blackewell at UCLA who has done ove 1400 of these surgeries. I have contacted him and am very impressed with his record. I intend to go see him this January.
    You may also want to look him up. I also would send all my info to Mayo and MD Anderson in Houston.

    If you'd like to delay I would suggest the fentanyl patches in addtion to the morphene . I am on both and the pain seems to be under control and I don't believe that that amount is too dangerous. I use a patch of 75. PLease let me know what you decide and if this was helpful. You can e mail me directly at marianne2428@yahoo.com

    Good luck in any case! God Bless!
  • sweetgammy
    sweetgammy Member Posts: 24 Member
    #13
    kurt2874 said:

    Jaw
    Hi,
    My name is Kurt and if it was not for your tonsil cancer, mine was on my tongue, everything else is exactly the same. I had cancer 3 yrs ago and am going through this jaw thing now. I am not sure what to do. I have surgery scheduled for Nov. but am skeptical if this is going to solve my problem. I really do not want to endure this surgery if I don't have to. I can open my mouth about 3/4 of an inch and eat things 3/4 of an inch or thinner. That is getting pretty tiresome. My lower left jaw is in constant agony and I am thankful to be cancer free. I guess I am trying to find out has anyone gone through this lower left jaw replacement surgery and can give me or whr0714 any advice?

    jawbone replacement
    Hi!
    I am in the same situation as you! Did you go ahead with the surgery in November? how did it turn out?
    Marianne
  • Hal61
    Hal61 Member Posts: 655
    #14
    newbride said:

    Thanks
    Thanks for noticing, missing me. Things have been rough here. 9/29 my husband had a CT done and on 10/1 we were told none of the aggressive treatment he had worked. He was given an option of additional surgery which would require removing all bone from his face under the eyesockets and complete reconstruction - the doctors said doing this only gives him a 10% chance of being cured. He has decided he does not want the surgery. Honestly when he asked the doctor what the doctor would do in his shoes the response was "from an ethical and moral point of view I don't know if I should encourage you to do this, but from a medical point of view if there is 1% chance you should fight for it".
    I think he made the right decision and we can live the rest of his days pain free.

    Right choice
    Thanks for posting newbride. I'm sorry you and your husband had to make that choice, and hope you'll keep posting. This is a survivors' board, and many of the people who post here are living at different stages of survival. We don't get many, or any, posts from our brothers and sisters who have made your husband's choice, or walk your path, and we should. Your doctor's words were wise. The medical point of view is a narrow one, and the decision should include the ethical and moral standards as well. There is only one correct decision, and that's the one you and your husband make. I wish for many peaceful and happy days for you both.
    best, Hal
  • Hondo
    Hondo Member Posts: 6,636 Member
    #15
    sweetgammy said:

    jawbone replacement
    Hello!
    I too need to have a jawbone replacement and like you have lots of pain asociated with infection and bone death. I have been putting it off for about a year now because I can't bear the thought of another hospital stay as well as the danger of having it not take because of being radiated twice. I can tell you however that it is critical to choose the most competent plastic surgeon to do the job. There is a Dr. Blackewell at UCLA who has done ove 1400 of these surgeries. I have contacted him and am very impressed with his record. I intend to go see him this January.
    You may also want to look him up. I also would send all my info to Mayo and MD Anderson in Houston.

    If you'd like to delay I would suggest the fentanyl patches in addtion to the morphene . I am on both and the pain seems to be under control and I don't believe that that amount is too dangerous. I use a patch of 75. PLease let me know what you decide and if this was helpful. You can e mail me directly at marianne2428@yahoo.com

    Good luck in any case! God Bless!

    Hi Sweetgammy

    Glad to have you here with us so welcome to CSN. I have a question you say you had radiation twice what was your Cancer. I had NPC and also had radiation twice to the face; a lot of my pain is all on one side, the side where I did not have the cancer. Also problems with can’t open the Jaw more them 14mm.

    I hope you stay and add support to the forum here, Thanks
    Hondo
  • Debi16043
    Debi16043 Member Posts: 53
    #16
    Mandible removed
    I had this surgery June 15 this year. I had all my teeth removed, implants put in, cand leg bone removed to make me a new aw bone and a skin graft plus 6 weeks of radiation treatment. I'm back to walking 3 miles a day and riding my bike. I don't worry at all about it coming back we are all only on this earth a short time and I put all my trust in god and his will be done, whether he allows me a healing or not, his will be done. I would be glad to answer any of your questions. It was tough but doable.
  • Hondo
    Hondo Member Posts: 6,636 Member
    #17
    Debi16043 said:

    Mandible removed
    I had this surgery June 15 this year. I had all my teeth removed, implants put in, cand leg bone removed to make me a new aw bone and a skin graft plus 6 weeks of radiation treatment. I'm back to walking 3 miles a day and riding my bike. I don't worry at all about it coming back we are all only on this earth a short time and I put all my trust in god and his will be done, whether he allows me a healing or not, his will be done. I would be glad to answer any of your questions. It was tough but doable.

    Hi Deb
    So very true, we are all going to die someday I just put it into the hands of my Lord know that nothing can happen to me without Him knowing it first, and if it is his will then it is my will as well.

    PS: Welcome to H&N on CSN

    God bless
    Hondo
  • MJ70
    MJ70 Member Posts: 75
    #18
    Jaw bone surgery...
    I had my lower left mandible replaced with my right fibula three years ago.. Radiation destoyed my circulation in the bone and i had about one month before it would of broken...ouch.....If you have to have this done to replace the pain its a no brainer..Took about 12 hours ...my family were the only ones that knew that and of course all the Medical staff who were great.... these are alot more common than most know. ..went in a 7am and woke up at 7.30 pm ,,spent 6 days in hospital...honestly they went so fast it seemed like just a few days..to me it was pretty painless...never miss the fibula. I was walking two days later in a walking boot...they call it free fibula flap surgery.. caused by osteoradionecrosis of the mandible Of course the mandible nerve and fibula nerves do not match but they always try and you have some numbness to deal with but that becomes a new normal.. Had some soreness near my ankle...Had it done at OSHU in Portland Oregon its a positive for me and hopefully for you if you go that way Mel
  • MJ70
    MJ70 Member Posts: 75
    #19
    Buddy1020 said:

    Surgery Tuesday December 21st
    Kurt, Please tell me how you are doing now. Read my post. I'm scared out of my mind. IF you give me your email I'll send you a current photo for you the way I look right now. I hope you'll respond.

    buddy:
    I would not worry about this surgery as it is alot more common than most people know.....If anyone who lives around a large Medical Shool teaching Hospital or any Doctor who has a MD/DMD degree they will know all about this surgery...
  • sweetgammy
    sweetgammy Member Posts: 24 Member
    #20
    Hondo said:

    Hi Sweetgammy

    Glad to have you here with us so welcome to CSN. I have a question you say you had radiation twice what was your Cancer. I had NPC and also had radiation twice to the face; a lot of my pain is all on one side, the side where I did not have the cancer. Also problems with can’t open the Jaw more them 14mm.

    I hope you stay and add support to the forum here, Thanks
    Hondo

    twice radiated
    Hi!
    Sorry I have been away from the site for awhile. PLease update me on your situation. We both have been radiated twice! I have had squamous cell carcinoma on both sides of my tongue with flap surgery. Currently the radiation is destroying my jawbone and I will need a replacement. I am looking for any feedback regarding a replacement. Can you give me any information or advice? where is the best place ot go?Who is the best surgeon? Are you experienceing anything like this? I understand that the success rate on a doubly radiated person is very low because of lack of a good blood supply! True? thanks!
    Sweetgammy
  • sweetgammy
    sweetgammy Member Posts: 24 Member
    #21
    Debi16043 said:

    Mandible removed
    I had this surgery June 15 this year. I had all my teeth removed, implants put in, cand leg bone removed to make me a new aw bone and a skin graft plus 6 weeks of radiation treatment. I'm back to walking 3 miles a day and riding my bike. I don't worry at all about it coming back we are all only on this earth a short time and I put all my trust in god and his will be done, whether he allows me a healing or not, his will be done. I would be glad to answer any of your questions. It was tough but doable.

    jawbone replacement
    Hi! I can't believe how successful this surgery was for you! Can I ask where you had the surgery and what doctor performed it? I understand that the success rate is very low for someone who has been doubly radiated because of a lack of a ggod blood supply.that leaves one with no bottom jaw and using a voice box! Please advise! and thanks!

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