jaw bone replacement surgery

24

Comments

  • sweetgammy
    sweetgammy Member Posts: 24 Member
    #22
    MJ70 said:

    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

    jawbone replacment
    reading this has definitely given me courage and hope. Roger Ebert (the movie critic) and I have the same surgeon here in chicago. His sugery was not successful and he was left with no face at the bottom and is using a computerized voice box. they could not get a good bloof supply.that is my worry! I keep putting it off and am very worried about waiting too long but I am so fearful of the surgery and so sick of hospitals! Please give me some more encouraging words if you don't mind! I'm so terrifed of waking up and having them tell me that it didn't work! or...waiting so long that the surgery is eaven more difficulat and I kill my slim chances of it working because of the double radiation. Am thinking about going to MD Anderson in Houston. What do you think?
  • sweetgammy
    sweetgammy Member Posts: 24 Member
    #23
    MJ70 said:

    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

    jawbone replacment
    reading this has definitely given me courage and hope. Roger Ebert (the movie critic) and I have the same surgeon here in chicago. His sugery was not successful and he was left with no face at the bottom and is using a computerized voice box. they could not get a good bloof supply.that is my worry! I keep putting it off and am very worried about waiting too long but I am so fearful of the surgery and so sick of hospitals! Please give me some more encouraging words if you don't mind! I'm so terrifed of waking up and having them tell me that it didn't work! or...waiting so long that the surgery is eaven more difficulat and I kill my slim chances of it working because of the double radiation. Am thinking about going to MD Anderson in Houston. What do you think?
  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #24
    sweetgammy said:

    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

    Hi sweetgammy,

    This surgery is not that unusual. There are many experts in the field who do this. Osteoradionecrosis is an unfortunate, but fairly common late sequellae of radiation to the mandible. It effects a certain percent of us who have radiation once, and is obviously going to prove more common in those of us who undergo radiation a second time. I'm not certain I'd panic over the selection of a surgeon to do the surgery.

    I'm getting ready to undergo radiation for my third malignancy, having had radiation the first time in 1998, then very radical surgery last year, and now chemo/IRMT this time. I chose an ENT oncologist back in 1998 who was then head of ENT ONC at St Louis University. He's now in private practice elsewhere in the city, but I still see him. He's done all my surgeries, and does mandible reconstructions all the time. He's a very competent man, and when and if I need replacement, he'll be the one I use.

    But there are many like him, and any one of them would do you a great job. The surgery required is about the same as what I went through last year, for radical removal of a floor of mouth malignancy, and I can tell you the surgery is tough, lasting over 12 hours, and the recovery is, well, about what you'd expect. It took quite a while to get over, but i was back to running long distances and doing about anything else I wanted in about 4 months.
  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #25
    sweetgammy said:

    jawbone replacment
    reading this has definitely given me courage and hope. Roger Ebert (the movie critic) and I have the same surgeon here in chicago. His sugery was not successful and he was left with no face at the bottom and is using a computerized voice box. they could not get a good bloof supply.that is my worry! I keep putting it off and am very worried about waiting too long but I am so fearful of the surgery and so sick of hospitals! Please give me some more encouraging words if you don't mind! I'm so terrifed of waking up and having them tell me that it didn't work! or...waiting so long that the surgery is eaven more difficulat and I kill my slim chances of it working because of the double radiation. Am thinking about going to MD Anderson in Houston. What do you think?

    Roger Ebert
    I'm not sure you can extrapolate from Roger Ebert's results to your situation. I've read that Roger had other rejection issues, and I am not sure at all that lack of blood supply was what created the problem for him. In the case of my large forearm graft, and I believe in fibula grafts, the blood flow is established from the carotid artery, not from some small mandibular artery that is in the previously radiated field. The carotid artery is huge, not subject to constriction down to the size to create poor flow. These are all things to disuss, of course, with the guy you want to do the surgery.

    Don't cross this bridge untill you've been properly taught by the expert! MD Anderson is obviously a fine institution, and they'd do a great job for you. But this is a case where there are many options, many of which may be more convenient for you.

    Best regards.
    Pat
  • Debi16043
    Debi16043 Member Posts: 53
    #26
    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?

    Lower left jaw bone replaced
    Hi everyone. I had gum cancer and it had gone into the mandible, jaw bone. My surgery was June 15, 2011 and it was a 13 hour surgery. They cut out my jaw bone, removed all of my teeth, made me a new jaw bone out if my leg. I was in MD Anderson seven days. Only in a lot of pain first day with leg and barely noticed any of the pain in my mouth even though all my teeth were removed, 9 implants put in and I had a trach. I'm doing fine now. I also had neck dissection and dr removed 75 lymp nodes, all cancer free. She said that was the most lymp nodes she had ever seen on one side. Lol. I can still walk fine and ride my bicycle. I feel the bone gone in my leg but it is not really painful just a hy. I'm in no pain except I'm now trying to get used to full mouth dentures, not easy, but hey I'm still here. I also had radiation so my jaw doesnt open as wide as it used too. During my surgery they had to cut some muscles on the side where cancer was so my smile is crooked anyone wants to see a pictur send me you're ail address I have photos of leg and jaw and now crooked smile. Lol. I hope any of this was useful but ask anything you want to know. My email address is dmassey1507@aol.co. As I don't get on here much but do answer all emails.
  • Debi16043
    Debi16043 Member Posts: 53
    #27
    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?

    Lower left jaw bone replaced
    Hi everyone. I had gum cancer and it had gone into the mandible, jaw bone. My surgery was June 15, 2011 and it was a 13 hour surgery. They cut out my jaw bone, removed all of my teeth, made me a new jaw bone out if my leg. I was in MD Anderson seven days. Only in a lot of pain first day with leg and barely noticed any of the pain in my mouth even though all my teeth were removed, 9 implants put in and I had a trach. I'm doing fine now. I also had neck dissection and dr removed 75 lymp nodes, all cancer free. She said that was the most lymp nodes she had ever seen on one side. Lol. I can still walk fine and ride my bicycle. I feel the bone gone in my leg but it is not really painful just a hy. I'm in no pain except I'm now trying to get used to full mouth dentures, not easy, but hey I'm still here. I also had radiation so my jaw doesnt open as wide as it used too. During my surgery they had to cut some muscles on the side where cancer was so my smile is crooked anyone wants to see a pictur send me you're ail address I have photos of leg and jaw and now crooked smile. Lol. I hope any of this was useful but ask anything you want to know. My email address is dmassey1507@aol.co. As I don't get on here much but do answer all emails.
  • Debi16043
    Debi16043 Member Posts: 53
    #28
    sweetgammy said:

    jawbone replacment
    reading this has definitely given me courage and hope. Roger Ebert (the movie critic) and I have the same surgeon here in chicago. His sugery was not successful and he was left with no face at the bottom and is using a computerized voice box. they could not get a good bloof supply.that is my worry! I keep putting it off and am very worried about waiting too long but I am so fearful of the surgery and so sick of hospitals! Please give me some more encouraging words if you don't mind! I'm so terrifed of waking up and having them tell me that it didn't work! or...waiting so long that the surgery is eaven more difficulat and I kill my slim chances of it working because of the double radiation. Am thinking about going to MD Anderson in Houston. What do you think?

    Jaw surgery
    My experience with MD Anderson was wonderful. My surgeon was dr Lewis, my plastic surgeon was dr. Garvey and my dental was dr. Jacobs. They worked as a team and did a good job. I have some numbness in jaw and chin and also near ankle where they took out bone and skin.
  • Debi16043
    Debi16043 Member Posts: 53
    #29
    sweetgammy said:

    jawbone replacment
    reading this has definitely given me courage and hope. Roger Ebert (the movie critic) and I have the same surgeon here in chicago. His sugery was not successful and he was left with no face at the bottom and is using a computerized voice box. they could not get a good bloof supply.that is my worry! I keep putting it off and am very worried about waiting too long but I am so fearful of the surgery and so sick of hospitals! Please give me some more encouraging words if you don't mind! I'm so terrifed of waking up and having them tell me that it didn't work! or...waiting so long that the surgery is eaven more difficulat and I kill my slim chances of it working because of the double radiation. Am thinking about going to MD Anderson in Houston. What do you think?

    Jaw surgery
    My experience with MD Anderson was wonderful. My surgeon was dr Lewis, my plastic surgeon was dr. Garvey and my dental was dr. Jacobs. They worked as a team and did a good job. I have some numbness in jaw and chin and also near ankle where they took out bone and skin.
  • ckjaw
    ckjaw Member Posts: 3
    #30
    can you let me know more
    can you let me know more details how your surgery and after the surgery.
    dr. surgery from the chin or inside the mouth.
    how soon you get well.
    you went through the proceedure and can you give some advice
  • gms425
    gms425 Member Posts: 4
    #31
    Jawbone re-construction
    Hello, I had ACC that started in my mandible and had what was supposed to be my only surgery almost 2 years ago. They removed almost my entire mandible and re-built it with the bone from my left leg. After a week I went home and 2 weeks later was back in the hospital to start 9 months in and out of the hospital and 3 more surgeries.

    In the end, they had to remove everything and leave me with no jawbone or lower teeth. I can only open my mouth about half an inch and can never eat solid foods again. I can hardly move my neck from scar tissue and the radiation.

    I had everything done at Rush in Chicago and had the best doctors in the country but all attempts to re-build failed. I would kill to be able to eat again but I'm not sure it would be worth the risk for anyone to go through this surgery.
  • Ingrid K
    Ingrid K Member Posts: 813
    #32
    gms425 said:

    Jawbone re-construction
    Hello, I had ACC that started in my mandible and had what was supposed to be my only surgery almost 2 years ago. They removed almost my entire mandible and re-built it with the bone from my left leg. After a week I went home and 2 weeks later was back in the hospital to start 9 months in and out of the hospital and 3 more surgeries.

    In the end, they had to remove everything and leave me with no jawbone or lower teeth. I can only open my mouth about half an inch and can never eat solid foods again. I can hardly move my neck from scar tissue and the radiation.

    I had everything done at Rush in Chicago and had the best doctors in the country but all attempts to re-build failed. I would kill to be able to eat again but I'm not sure it would be worth the risk for anyone to go through this surgery.

    Hi gms425, I sent you a
    Hi gms425, I sent you a private message also. I saw you had your surgery in Chicago. I live outside Chicago, in suburban Huntley. I had my surgery at Loyola. It sounds like you have been through quite a lot. Did you have issues with blood supply to rebuilt jaw ?
  • gms425
    gms425 Member Posts: 4
    #33
    Ingrid K said:

    Hi gms425, I sent you a
    Hi gms425, I sent you a private message also. I saw you had your surgery in Chicago. I live outside Chicago, in suburban Huntley. I had my surgery at Loyola. It sounds like you have been through quite a lot. Did you have issues with blood supply to rebuilt jaw ?

    Hello Ingrid
    Yes, the blood supply to the flap failed and everything died. They had to do another flap from a muscle in my belly but no jawbone replacement.
  • Mikemetz
    Mikemetz Member Posts: 465 Member
    #34
    ckjaw said:

    can you let me know more
    can you let me know more details how your surgery and after the surgery.
    dr. surgery from the chin or inside the mouth.
    how soon you get well.
    you went through the proceedure and can you give some advice

    Looking at jaw replacement surgery myself
    I was told last week that it is almost certain that I'll need my lower left jaw reconstructed. I have a CT scan this week that the doctor thinks will seal the deal on needing that procedure. He spoke as if the scan was the first step in planning for the procedure--not being another part of the diagnosis.

    I understand the steps in the process and know what they will do while I'm on the table. What I don't have is a good picture of what happens once I leave the hospital. How long for a functional recovery (like going back to work) and how long to a "full" recovery (Getting back as much as I'll get back)? I know there are a lot of "ifs" in this scenario, but my wife and I are just trying to plan ahead as much as we can at this time.
  • George_Baltimore
    George_Baltimore Member Posts: 303
    #35
    gms425 said:

    Jawbone re-construction
    Hello, I had ACC that started in my mandible and had what was supposed to be my only surgery almost 2 years ago. They removed almost my entire mandible and re-built it with the bone from my left leg. After a week I went home and 2 weeks later was back in the hospital to start 9 months in and out of the hospital and 3 more surgeries.

    In the end, they had to remove everything and leave me with no jawbone or lower teeth. I can only open my mouth about half an inch and can never eat solid foods again. I can hardly move my neck from scar tissue and the radiation.

    I had everything done at Rush in Chicago and had the best doctors in the country but all attempts to re-build failed. I would kill to be able to eat again but I'm not sure it would be worth the risk for anyone to go through this surgery.

    Jawbone re-construction
    I have pretty much the same story as gms425. I had my surgery June 24th last year. The bone didn't take so they removed that. A little later, one of the screws from the titanium plate started working loose so they had to take the plate out. I am left with a swinging half jaw and little prospects of ever eating food again. Anyone who is thinking about the surgery just realize that it doesn't always work and be prepared for that eventuality. I wasn't.
  • gms425
    gms425 Member Posts: 4
    #36
    George_Baltimore said:

    Jawbone re-construction
    I have pretty much the same story as gms425. I had my surgery June 24th last year. The bone didn't take so they removed that. A little later, one of the screws from the titanium plate started working loose so they had to take the plate out. I am left with a swinging half jaw and little prospects of ever eating food again. Anyone who is thinking about the surgery just realize that it doesn't always work and be prepared for that eventuality. I wasn't.

    jawbone replacement
    George_Baltimore, sorry to hear that you experienced the same thing as I did. Dont let it get you down though. At least we are alive. It certainly could have worked out worse for us both. I can never eat solids again but I am finding different things every day to "eat". My most recent thing is peanut butter. Even though you cant eat, you can get to taste things. I know you probably cant taste much but it is slowly coming back. seems like the more I taste things the better it gets.
  • Mikemetz
    Mikemetz Member Posts: 465 Member
    #37
    Mikemetz said:

    Looking at jaw replacement surgery myself
    I was told last week that it is almost certain that I'll need my lower left jaw reconstructed. I have a CT scan this week that the doctor thinks will seal the deal on needing that procedure. He spoke as if the scan was the first step in planning for the procedure--not being another part of the diagnosis.

    I understand the steps in the process and know what they will do while I'm on the table. What I don't have is a good picture of what happens once I leave the hospital. How long for a functional recovery (like going back to work) and how long to a "full" recovery (Getting back as much as I'll get back)? I know there are a lot of "ifs" in this scenario, but my wife and I are just trying to plan ahead as much as we can at this time.

    Debridement, not reconstruction
    During a long meeting with a different oral surgeon, it was determined that the first step would be a debridement, not a reconstruction/resectioning of my left mandible. I know that sounds like good news, but I was also told that this procedure has a moderate failure rate, and I could still be looking at the more radical procedure down the line. Does anyone have anything they could tell me about trying the debridement first? How long did it take to recover from it, and how long does it take until they know if it has worked?
  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #38
    Mikemetz said:

    Debridement, not reconstruction
    During a long meeting with a different oral surgeon, it was determined that the first step would be a debridement, not a reconstruction/resectioning of my left mandible. I know that sounds like good news, but I was also told that this procedure has a moderate failure rate, and I could still be looking at the more radical procedure down the line. Does anyone have anything they could tell me about trying the debridement first? How long did it take to recover from it, and how long does it take until they know if it has worked?

    Mike
    I've done a fair amount of reading, as I'm perceived as being high risk to need this in the future. I'm going to PM you also, but can I ask for sake of this discussion if they are talking about HBO now in advance of your debridement, or not? It is going to take quite a bit of time, one way of the other. Bone heals very slowly, under the best of circumstances. Debridement just means to clean up. So their plan is to clean up, then watch for weeks and months to see if you will heal.

    If you don't, theyll move on to the full replacement. My general impression of all things medical is that if there is any way to get by without a full-court press treatment, that is always the way to start. There isn't a huge safety net under you with this situation. Its not like you just get an overdo or two if this fails, so I'd err on the side of conservative intervention.

    Pat
  • George_Baltimore
    George_Baltimore Member Posts: 303
    #39
    gms425 said:

    jawbone replacement
    George_Baltimore, sorry to hear that you experienced the same thing as I did. Dont let it get you down though. At least we are alive. It certainly could have worked out worse for us both. I can never eat solids again but I am finding different things every day to "eat". My most recent thing is peanut butter. Even though you cant eat, you can get to taste things. I know you probably cant taste much but it is slowly coming back. seems like the more I taste things the better it gets.

    jawbone replacement
    Hi GMS, Some days, I can't stop crying. Other days,I see people that are worse off and I realize how lucky I've been in my life. At this point, I would be happy to be able to swallow one of my Mexican Coffees. Before the surgery, I was being dilated just about every month to keep the esophogeal stricture open. I could swallow food with the help of a swig of milk. For about six months after the reconstruction surgery, I was only dilated once and I am now paying the price for it. The stricture is not staying open very long after the dilation. It is getting better (I think). My doc was able to partially use a 60 to get me open the last time. I have another dilation scheduled in two days. Maybe this will be the time that we break through all the way and stay open for a while. I'm keeping my fingers crossed.

    Unfortunately, I never lost my taste buds stretching all the way back to 2004. It may have been easier if I had. I'm glad to hear that you are enjoying the tasting the peanut butter. A couple weeks ago, I put a peanut in my mouth and enjoyed the salt and flavor so I know what you mean. Take care and good luck!
  • Mikemetz
    Mikemetz Member Posts: 465 Member
    #40
    longtermsurvivor said:

    Mike
    I've done a fair amount of reading, as I'm perceived as being high risk to need this in the future. I'm going to PM you also, but can I ask for sake of this discussion if they are talking about HBO now in advance of your debridement, or not? It is going to take quite a bit of time, one way of the other. Bone heals very slowly, under the best of circumstances. Debridement just means to clean up. So their plan is to clean up, then watch for weeks and months to see if you will heal.

    If you don't, theyll move on to the full replacement. My general impression of all things medical is that if there is any way to get by without a full-court press treatment, that is always the way to start. There isn't a huge safety net under you with this situation. Its not like you just get an overdo or two if this fails, so I'd err on the side of conservative intervention.

    Pat

    HBO, again
    I had 30 HBOs before a tooth extraction last October, and 10 more after. I was told then that 40 was a "lifetime dose," but the oral surgeon is now saying that I should have 10 more after the debridement, to help with that healing. So, apparently, I am now in my second lifetime! I do understand that the debridement is the (much) more conservative option at this time, and from what I've heard and read about the reconstructive surgery, I can only hope that the debridement works. It will cost me another tooth, and put me one step closer to a lower denture, but given the only other option, I can accept that.

    Good luck with your situation and let's stay in touch.

    Mike
  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #41
    Mikemetz said:

    HBO, again
    I had 30 HBOs before a tooth extraction last October, and 10 more after. I was told then that 40 was a "lifetime dose," but the oral surgeon is now saying that I should have 10 more after the debridement, to help with that healing. So, apparently, I am now in my second lifetime! I do understand that the debridement is the (much) more conservative option at this time, and from what I've heard and read about the reconstructive surgery, I can only hope that the debridement works. It will cost me another tooth, and put me one step closer to a lower denture, but given the only other option, I can accept that.

    Good luck with your situation and let's stay in touch.

    Mike

    HBO
    I think can be used quite a bit more often than this. It is recommended if any high risk proceedure is done more than three years after first HBO exposure, because the effect is not permanent. I had an article saved which looked at all of this on issues of debridement and reconstruction. Let me see if I can find it and I'll send it to you. It may take some time cause I'm disorganized right now.


    Also, ratface has a great collection of HBO articcles, which he sent to me a while back. They are very hard to cut and paste, but I'll try to get you those as well. If I fail, youcould PM him and ask. He'a around often.

    Best to you.

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