New jaw bone?

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Surgery removed about 40% of my right jaw bone and I am having difficulty because my whole jaw structure is moving to the right making chewing increasingly difficult. Recent consult at UCSF provided a solution to take a piece of my lower leg bone (fibia) and some tissue and skin and use it to replace my jaw bone. Pretty dramatic stuff! Does anyone have any experience of this? It is a quality of life issue so the decision is mine.

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  • Hal61
    Hal61 Member Posts: 655
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    Increasingly difficult, amen
    Hello Ms. Elliott, welcome. I don't have experience of your situation, but it's very likely there are those here who have, and they will offer more specific help and support. But, I am familiar with making quality of life decisions. I'm about a year and a half out of treatment for BOT SCC. I had 35 rads, chemo, and a partial neck dissection. I've been left with problems from the Cisplatin, and the dissection--and maybe the radiation, the dissection and the radiation kind of run together on side effects sometimes.

    My issues weren't as dramatic, as you said, as yours. I resisted the dissection because I knew it could cause issues. My three-month scan showed borderline radiance--uptake--at the site of original lymph involvement. My medical onc said have the surgery, my ENT said he was on the fence, and my radiologist said wait another three months. I told my radiologist--who was a great young Chinese lady: "I'm tired of making life or death decisions, you make this one." So she said again to wait. So I did. No harm done, the reading was still borderline in the area at six months, the ENT fell on the side of getting the dissection,so it was 2 of 3, and I got the surgery. My radiologist was still for waiting.

    Geez, these are tough decisions. Make them the best you can, and I know people here will share their experiences to help you.

    Best, Hal
  • Hondo
    Hondo Member Posts: 6,636 Member
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    Hi ian elliott

    First Welcome to CSN just glad you found us. I have heard a lot about jaw replacement and I think there were a few other survivors here that had it just can’t remember there post names. If you are still able to chew I believe you are one of the good ones as I hear others that had this and can’t chew at all but must use there PEG tube.

    Please keep us posted on your progress as it will help other survivors to know what they can expect.

    Wishing you well
    Hondo
  • Hal61
    Hal61 Member Posts: 655
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    Ian, I mean, sorry
    Hi Ian, sorry for calling you "Ms". I misread your "i" as a "j"

    Hal
  • Hondo
    Hondo Member Posts: 6,636 Member
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    Hal61 said:

    Ian, I mean, sorry
    Hi Ian, sorry for calling you "Ms". I misread your "i" as a "j"

    Hal

    Hal


    We are still human and still making mistakes, we must still be alive.

    Hondo
  • kkw62
    kkw62 Member Posts: 12
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    My husband underwent this
    My husband underwent this surgery last month. It was a 13.5 hr surgery and he was in the hospital for nearly 2 wks. They took his fibia, muscle, veins, arteries and made a new jawbone and gumline (flap). He was in ICU the first day and then moved to the floor. The first 5 days he was unable to talk so he used a dry erase board to communicate with me, nurses and his drs. He was released from the hospital with his trach (which had been switched to a smaller one that allowed him to use his voice) and some pretty nasty stitches in his jaw line. The stitches from his leg were removed before he went home. He continues to have his feeding tube which he has high hopes will be removed the end of this week during a checkup. His cancer treatments ended 3 years ago and about 1 year later he started developing teeth issues. He has had several teeth removed and completed 30 hyperbaric treatments. He has yet to start eating any food - liquids only. His only complaint has been the leg pain - no major jaw pain. His leg incision is from his knee cap area to his ankle and he has extremely long legs. His jaw was replaced as it had broke - possibly from yawning or even turning his head. The jaw became infected before we got the surgery scheduled and quite painful; then he was given strong antibiotics for the infection which irritated his stomach and he was eating only the minimal amounts. So far he has no regrets. Hope this helps answer a few of your questions. Best of luck!!