replacement of left jawbone with bone from the leg

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Thomas1950
Thomas1950 Member Posts: 3
in Head and Neck Cancer #1

hi all im just wondering if anyone has had this, i had an op for neck cancer just over 10years ago, it got rid of the cancer, been clear for over 10 years now, but i cant swollow and have a peg. but thats not a problem.  i had radiotherphy for 6 weeks every day, and because of that it killed off all of my blood cells in my jaw,  mined its taken 10 years to come out but my left side of my face has srunking im in no pain at all, but my consaltant wants to take all of the left jaw bone out and replace it with a bit of leg bone , and i dont fancy that, the main op i had was 16 hrs one, when i was 54  im 65 now. esuse the spelling, never was any good at it. i think its only cosmatic really, i dont care what i look like as long as im not in pain.  Tom

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  • wmc
    wmc Member Posts: 1,804
    #2
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    Sorry to hear that.............

    Sorry Tom to hear that. Have you asked, why if is recomending doing that. Like you said it might be cosmedic, but it might be to stop the blood cell lost ans spreading any furture where it will cause problems, including eating. It might cause you to loose teeth, or jawbone that is needed for dentures. I would just ask why he feels you need this. I would hope he has a very sound reason, and it is not "just Because". I'm sure he is a very good doctor and will have a good explanation. Best of luck to you, and please let us know what he says.

    Bill

  • hwt
    hwt Member Posts: 2,328 Member
    #3
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    wmc said:

    Sorry to hear that.............

    Sorry Tom to hear that. Have you asked, why if is recomending doing that. Like you said it might be cosmedic, but it might be to stop the blood cell lost ans spreading any furture where it will cause problems, including eating. It might cause you to loose teeth, or jawbone that is needed for dentures. I would just ask why he feels you need this. I would hope he has a very sound reason, and it is not "just Because". I'm sure he is a very good doctor and will have a good explanation. Best of luck to you, and please let us know what he says.

    Bill

    Tom

    I would definitely say no if it is strictly cosmetic. My cancer in 2012 was of the lower mandible so I had the fibula put in. Surgery was 19 hours. They kept me in an induced coma four days following and ICU 2 weeks. It took months for my leg to heal because they take so much tissue with the fibula. Cosmetically, it did not match up with the other side like they said it would. Sept. 2014, the titanium became infected and had to be removed along with the fibula being debrided. Next step is fibula coming out. I had 3 years of constant discomfort, not pain. If medically necessary, search out the best surgeon around, this is definitely not a little cosmetic thing!

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #4
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    Tom, i don't think some

    Tom, i don't think some people realize the hell we go through to beat cancer and that after all that, we don't WANT anything that is NOT life threatening.  If there is a chance it could get worse and cause more problems, then I may get a second opinon then look for the best doctor but if it is not ABSOLUTLY  necessary, I'M NOT DOING IT!  I refuse to go through anything more unless it will lead to worse problems.  i wish you the best in making your decision.  Please let us know what you decide. 

    God bless you,

    dj

  • Thomas1950
    Thomas1950 Member Posts: 3
    #5
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    debbiejeanne said:

    Tom, i don't think some

    Tom, i don't think some people realize the hell we go through to beat cancer and that after all that, we don't WANT anything that is NOT life threatening.  If there is a chance it could get worse and cause more problems, then I may get a second opinon then look for the best doctor but if it is not ABSOLUTLY  necessary, I'M NOT DOING IT!  I refuse to go through anything more unless it will lead to worse problems.  i wish you the best in making your decision.  Please let us know what you decide. 

    God bless you,

    dj

    hi

    Thank  you all for the advice and answers, i go to see him this friday 22nd will talk more about it then, but if its not life threatning i wont have it done.  Tom.

  • MJ70
    MJ70 Member Posts: 75
    #6
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    I had mine done six years ago and and  all went vry well..still is holding up well...matches up well and looks normal.... they took it from  lower right fbula..it did take a few weeks to heal that part..was  walkng on second day of six days in hsopital... Had excelllent surgeons at oshu in Portland ore ..Sorry to hear of your problems....My only recommendatin is to ask or find out how many they have done...??/ I do womder how long mine  will last...My only problem is they did move lots of muscles around it seems as i recently have stared using a peg or Mickey Button as swallowing is difficult and have had a couple bouts of aspritating pneumonia....the  Mickey button (peg) has helped but getting tired of the formult after 8 months ..looking at real foods  and willl aked Hondo more about his mickey botton ..i have a 22 fr but need a 24 fr and blender etc..  good lucl Tom.. 

  • Hondo
    Hondo Member Posts: 6,636 Member
    #7
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    Hi Tom

    Welcome to CSN H&N, I have almost the same problem. I treated my NPC back in 2002 and again in 2004 with radiation now 12 years later I live on a PEG tube because I can no longer swallow and can’t open my jaw more than 8mm. I can’t find a dentist or anyone who can help me. I am doing the best I can trying to keep my Teeth clean and health but it is very hard when you can’t even get a tooth brush in your mouth to clean them with. So far my ENT has said nothing about jaw bone replacement, take care and please keep posting.

     

    Hondo

  • traceyd1
    traceyd1 Member Posts: 79 Member
    #8
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    My husband had this done in

    My husband had this done in Feb. 2012 for cancer in the jaw.  He had to have a revision three days later ( due to damage from radiation) and the whole thing done again 5 days later using the other fibula.  No cake walk!  The first surgery was 18 hours, second 10 hours, and the third one was 14 hours.  Definitely not fun.  He had no complications afterward, though.  He did have a feeding tube and a trach after the procedure.  If the jaw is deteriorating, this may be the only option.  My husband is 100% healed after this surgery, as far as his legs go.  He still has issues with dry mouth and loss of taste.  Good luck

  • Mikemetz
    Mikemetz Member Posts: 465 Member
    #9
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    Been there, done that

    Thomas,

     

    I had a left jaw resection on May 1 of 2014.  My ORN came on a lot faster than yours--my rads were less than 5 years before the jaw replacement.  If you want to know more about this, send me a private email--there is a lot to this that you need to know ahead of time.

    Mike

     

     

     

     
  • TracyLynn72
    TracyLynn72 Member Posts: 839
    #10
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    Lower left jaw

    I had to have 1/4 of my lower left jaw removed due to MEC tumor that had grown through the bone.  They replaced mine with a metal plate and not bone from my leg.  It has been fine (just have a "heavy feeling") for almost 2 years now.  My surgeon preferred the metal plate because the recovery was much easier and faster.  I wish you all the luck with whatever decision you make.  

  • sabriene
    sabriene Member Posts: 28
    #11
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    TracyLynn72 said:

    Lower left jaw

    I had to have 1/4 of my lower left jaw removed due to MEC tumor that had grown through the bone.  They replaced mine with a metal plate and not bone from my leg.  It has been fine (just have a "heavy feeling") for almost 2 years now.  My surgeon preferred the metal plate because the recovery was much easier and faster.  I wish you all the luck with whatever decision you make.  

    Jaw Bone Surgery

    Good to hear your doing pretty well.

    Appears, I may need a lower jaw bone removed.  This one surgeon is saying he would not replace anything due to may age and the recovery time.  This was if they take a bone from another part of my body. However, it sounds like your doing pretty well with the metal plate.  Where did you have this surgery, and mind telling me who the surgeon was for sounds intestesting? I may want to get in contact with the surgeon.

    Roger

  • duck1255
    duck1255 Member Posts: 40
    #12
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    sabriene said:

    Jaw Bone Surgery

    Good to hear your doing pretty well.

    Appears, I may need a lower jaw bone removed.  This one surgeon is saying he would not replace anything due to may age and the recovery time.  This was if they take a bone from another part of my body. However, it sounds like your doing pretty well with the metal plate.  Where did you have this surgery, and mind telling me who the surgeon was for sounds intestesting? I may want to get in contact with the surgeon.

    Roger

    Jaw surgery

    I had surgery at Cleveland Clinic in July to remove part of my right mandible. For now they used a titanium plate and eventually plan to use part of my leg bone to replace it. I plan to wait as long as I can they say the plate will fail eventually probably in a year or 2. My surgeons were Dr Brian Burkey and Dr Michael Fritz. I would recommend both of them they are top notch.

  • hwt
    hwt Member Posts: 2,328 Member
    #13
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    duck1255 said:

    Jaw surgery

    I had surgery at Cleveland Clinic in July to remove part of my right mandible. For now they used a titanium plate and eventually plan to use part of my leg bone to replace it. I plan to wait as long as I can they say the plate will fail eventually probably in a year or 2. My surgeons were Dr Brian Burkey and Dr Michael Fritz. I would recommend both of them they are top notch.

    Fibula removed

    Writing from hospinal bed as had fibula removed from my jaw  this morning. It was there since Jan 2012. My titanium got infected and was removed last September. Many never have issues I did.  My original surgery was Barnes/Siteman Cancer Center. I do not recommend. forgot to say, hair grows in mouth. Radiation removed it completely but since you have already been radiated, you would need laser tx to get rid of. If this is cosmetic please give serious thought unless medically necessary.

  • TracyLynn72
    TracyLynn72 Member Posts: 839
    #14
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    sabriene said:

    Jaw Bone Surgery

    Good to hear your doing pretty well.

    Appears, I may need a lower jaw bone removed.  This one surgeon is saying he would not replace anything due to may age and the recovery time.  This was if they take a bone from another part of my body. However, it sounds like your doing pretty well with the metal plate.  Where did you have this surgery, and mind telling me who the surgeon was for sounds intestesting? I may want to get in contact with the surgeon.

    Roger

    My surgery

    to replace the jawbone with the metal plate was done along with the tumor removal.  I had all of my recovery at once and it truly wasn't too bad.  I've had no issues with the plate, 2 years later.  My surgeon was Dr. Kamerer in Charlotte NC.  He is with Charlotte Eye, Ear, Nose and Throat and with the Levine Cancer Center.  I honestly can not say enough good things about the Levines!  They are a generous, amazing family with a huge cancer center and a Children's Hospital.  I was treated incredibly well and the staff is top notch!  Wishing you the very best with your surgery.  Dr. K just wasn't a fan of the removal of bone from my leg....he felt confident with the metal plate enough to go that route and I agreed.  He's a Harvard Med School graduate, so I went with his opinions! haha

  • wmolivertx
    wmolivertx Member Posts: 16 Member
    #15
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    Jawbone

    Thomas,  after about 3 or 4 years post treatment I broke my jaw when eating a cracker.  It was a slight crack and really didn't cause that much pain.  I went back to MD Anderson and they recommened that I have the same procedure.  After setting the date for the surgery, my wife and I discussed it and came to the conclusion that since there really was no pain why go through such a major surgery.  Anyway, day before I let them know that I would not be doing it and really haven't noticed any problems these 15 years later.

    Hope that helps a bit.

     

    Mike

     

     

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