Jawbone Replacement due to disintegration of radiated jawbone
Comments
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That is a TOUGH oneTiger88 said:Our Dilemma
My sister in law has just been diagnosed with stage 4 cancer in her lower jaw but what is complicating this is that she is also mentally retarded - about 12 year old though she is 60 years old and she has severe sight problems (+1200 degrees) and hearing deficiency and slightly slurred speech
She will require removal of her lower jaw and reconstruction with thigh bone and then eventually dentures - similar to what you have experienced
there are 2 camps in the family
Camp One - against surgery due 'why make her suffer' and 'what for?' and let her die in 6 months to one year and avoid all the post operative care
Camp Two - go for surgery and extend her life even though long term removal of cancer is only suggested at 50/50
Reason why I am writing is for your personal input into how difficult the recovery process is and whether it is worth it considering the extra circumstances of her being mentally handicapped?
I would add that she is not unhappy and lives a simple life with her pet birds, her daily routine and her love of going out to eat (something that she will not be able to do for what I think will be 6 months)
Another consideration is my son and my daughter's weddings which will happen over the next 2 years and it would be nice for them to have her around for that
Your frank comments?
thanks
While I did not have cancer in the jawbone, the radiation from my base of tongue cancer affected the bone so that 7 years later, I went through jaw replacement. My bone graft did not work so now, I am left with a partial jaw. I can't imagine someone going through what I went through and not understanding what is happening to them. How well do her doctors know her? Do they feel she would understand enough to proceed? I really hate to say this but if I had it all to do over again, I would not have the replacement. There are others on this board whose operations went fine. If she didn't have the operation, can they make her comfortable? I'm just rambling at this point because I don't know what to say except you and your family have my prayers.0 -
Cancer of jawGeorge_Baltimore said:That is a TOUGH one
While I did not have cancer in the jawbone, the radiation from my base of tongue cancer affected the bone so that 7 years later, I went through jaw replacement. My bone graft did not work so now, I am left with a partial jaw. I can't imagine someone going through what I went through and not understanding what is happening to them. How well do her doctors know her? Do they feel she would understand enough to proceed? I really hate to say this but if I had it all to do over again, I would not have the replacement. There are others on this board whose operations went fine. If she didn't have the operation, can they make her comfortable? I'm just rambling at this point because I don't know what to say except you and your family have my prayers.
Not certain where the 50/50 is coming from. My doctor told me my cancer in jaw was treatable and curable. Female age 61. The option of no tx was to wait around until I went to hospice. Of course, I opted for surgery 01/2012. Surgery was 19 hours long followed by 4 days in an induced coma and 8 days in intensive care, a couple of days in a regular room and home. No food no water by mouth. No pain. Had a trach, very difficult for me, but did not go home with me. Healing of leg wound took most effort. It had to be cleaned and bandaged daily for weeks, required walker then cane until healed. I have very little recall of the hospital but did have horrific halucinations while there. I read that Mayo in Rochester is doing procedure without using fibula which would have cut my recovery time significantly. If that were all to the story, it was not bad at all. However, I had lymph node involvement which required rads & chemo. That was much harder on me than the surgery but I got thru it. Given the same choice , would I do it all again, YES. My scans have shown NO EVIDENCE OF DISEASE. Granted, yours is a special situation. If you opt for surgery, I pray rads/chemo are not needed.0 -
Jaw Cancerhwt said:Cancer of jaw
Not certain where the 50/50 is coming from. My doctor told me my cancer in jaw was treatable and curable. Female age 61. The option of no tx was to wait around until I went to hospice. Of course, I opted for surgery 01/2012. Surgery was 19 hours long followed by 4 days in an induced coma and 8 days in intensive care, a couple of days in a regular room and home. No food no water by mouth. No pain. Had a trach, very difficult for me, but did not go home with me. Healing of leg wound took most effort. It had to be cleaned and bandaged daily for weeks, required walker then cane until healed. I have very little recall of the hospital but did have horrific halucinations while there. I read that Mayo in Rochester is doing procedure without using fibula which would have cut my recovery time significantly. If that were all to the story, it was not bad at all. However, I had lymph node involvement which required rads & chemo. That was much harder on me than the surgery but I got thru it. Given the same choice , would I do it all again, YES. My scans have shown NO EVIDENCE OF DISEASE. Granted, yours is a special situation. If you opt for surgery, I pray rads/chemo are not needed.
My husband had mandibular sarcoma that was diagnosed in December 2011. Total shock to us, as he has never smoked or chewed tobacco. Little did we know that sarcomas don't discriminate! He began radiation 1/12 and had 20 treatments. Lymph nodes were clear, so he didn't need chemo. He had a segmental mandibulectomy and partial neck dissection 2/27/12. Surgery was supposed to take 12 hours, but ended up taking 18. There were problems with the blood flow to the fibular free flap due to damage from radiation. After 48 hours we had to go back to surgery for 8 hours due to loss of blood flow. Doctors were unable to re-attach blood flow, so they removed entire flap and started over four days later. They then used the other fibula and reattached veins/arteries to the other side of the neck, and we had no more complications. He had a trach for 18 days, was in ICU for 15 days, and had the trach removed the day we came home. His primary pain was in his neck, as he had neck fusion surgery several years ago. He had a feeding tube for about three months and lost about 50 pounds. His wound care was pretty intense, as both his fibulas were removed, and one of his skin grafts didn't heal properly. He had extensive physical therapy and OT for lymphodema. I am a speech therapist, so i was able to help him with some of his speech issues, but he also had a phenomenal speech therapist that works primarily with his surgeon. He really didn't have many problems. Was able to progress to a soft diet pretty easily. Definitely not a walk in the park. The first week home from the hospital was very rough. He had the sensation that he was choking, but this was because his mouth was so dry and he had dried clots of blood in the back of his throat that we had to wait to work out and suction up. He is to have de-bulking surgery in two weeks and they will also take a bit of hip to place in a gap in his jaw that didn't properly fuse. He has been back to work full time since May and will actually take our youngest on a Dad-son trip to Orlando this weekend. He will begin the process of implants in about six months. Although I would not wish this journey on my worst enemy, I feel that now that we have made it through this, we can make it through anything. Good Luck to you all.0 -
Hi Traceytraceyd1 said:Jaw Cancer
My husband had mandibular sarcoma that was diagnosed in December 2011. Total shock to us, as he has never smoked or chewed tobacco. Little did we know that sarcomas don't discriminate! He began radiation 1/12 and had 20 treatments. Lymph nodes were clear, so he didn't need chemo. He had a segmental mandibulectomy and partial neck dissection 2/27/12. Surgery was supposed to take 12 hours, but ended up taking 18. There were problems with the blood flow to the fibular free flap due to damage from radiation. After 48 hours we had to go back to surgery for 8 hours due to loss of blood flow. Doctors were unable to re-attach blood flow, so they removed entire flap and started over four days later. They then used the other fibula and reattached veins/arteries to the other side of the neck, and we had no more complications. He had a trach for 18 days, was in ICU for 15 days, and had the trach removed the day we came home. His primary pain was in his neck, as he had neck fusion surgery several years ago. He had a feeding tube for about three months and lost about 50 pounds. His wound care was pretty intense, as both his fibulas were removed, and one of his skin grafts didn't heal properly. He had extensive physical therapy and OT for lymphodema. I am a speech therapist, so i was able to help him with some of his speech issues, but he also had a phenomenal speech therapist that works primarily with his surgeon. He really didn't have many problems. Was able to progress to a soft diet pretty easily. Definitely not a walk in the park. The first week home from the hospital was very rough. He had the sensation that he was choking, but this was because his mouth was so dry and he had dried clots of blood in the back of his throat that we had to wait to work out and suction up. He is to have de-bulking surgery in two weeks and they will also take a bit of hip to place in a gap in his jaw that didn't properly fuse. He has been back to work full time since May and will actually take our youngest on a Dad-son trip to Orlando this weekend. He will begin the process of implants in about six months. Although I would not wish this journey on my worst enemy, I feel that now that we have made it through this, we can make it through anything. Good Luck to you all.
welcome to the group, and thanks for the story. You guys have really been through it. Glad things are finally looking up.
Pat0 -
Jaw cancertraceyd1 said:Jaw Cancer
My husband had mandibular sarcoma that was diagnosed in December 2011. Total shock to us, as he has never smoked or chewed tobacco. Little did we know that sarcomas don't discriminate! He began radiation 1/12 and had 20 treatments. Lymph nodes were clear, so he didn't need chemo. He had a segmental mandibulectomy and partial neck dissection 2/27/12. Surgery was supposed to take 12 hours, but ended up taking 18. There were problems with the blood flow to the fibular free flap due to damage from radiation. After 48 hours we had to go back to surgery for 8 hours due to loss of blood flow. Doctors were unable to re-attach blood flow, so they removed entire flap and started over four days later. They then used the other fibula and reattached veins/arteries to the other side of the neck, and we had no more complications. He had a trach for 18 days, was in ICU for 15 days, and had the trach removed the day we came home. His primary pain was in his neck, as he had neck fusion surgery several years ago. He had a feeding tube for about three months and lost about 50 pounds. His wound care was pretty intense, as both his fibulas were removed, and one of his skin grafts didn't heal properly. He had extensive physical therapy and OT for lymphodema. I am a speech therapist, so i was able to help him with some of his speech issues, but he also had a phenomenal speech therapist that works primarily with his surgeon. He really didn't have many problems. Was able to progress to a soft diet pretty easily. Definitely not a walk in the park. The first week home from the hospital was very rough. He had the sensation that he was choking, but this was because his mouth was so dry and he had dried clots of blood in the back of his throat that we had to wait to work out and suction up. He is to have de-bulking surgery in two weeks and they will also take a bit of hip to place in a gap in his jaw that didn't properly fuse. He has been back to work full time since May and will actually take our youngest on a Dad-son trip to Orlando this weekend. He will begin the process of implants in about six months. Although I would not wish this journey on my worst enemy, I feel that now that we have made it through this, we can make it through anything. Good Luck to you all.
Where was the surgery done? I live in Florida, have stage 4 of mandible and floor of mouth. Wondering about anyones experiences at Moffitt or MD Anderson Orlando.
Thanks0 -
MDAnderson in Orlando has come up from time to timevetorama said:Jaw cancer
Where was the surgery done? I live in Florida, have stage 4 of mandible and floor of mouth. Wondering about anyones experiences at Moffitt or MD Anderson Orlando.
Thanks
Why don't you start a new thread and raise the topic? When you get a post like this buried way down a thread it doesn't get as much attention as it should. If you'll start anew you should get a number of answers.
I had floor of mouth cancer in 2010. Had a radical resection and reconstruction, which went fine. So I can tell you quite a bit about the surgery itself. Mine was done in St Louis, MO. It wasn't fun, but I got through it pretty well.
Pat0 -
STLlongtermsurvivor said:MDAnderson in Orlando has come up from time to time
Why don't you start a new thread and raise the topic? When you get a post like this buried way down a thread it doesn't get as much attention as it should. If you'll start anew you should get a number of answers.
I had floor of mouth cancer in 2010. Had a radical resection and reconstruction, which went fine. So I can tell you quite a bit about the surgery itself. Mine was done in St Louis, MO. It wasn't fun, but I got through it pretty well.
Pat
I also had mine done in St Louis MO.0 -
I might be heading in this directionsweetgammy said:jawbone replacement update!
Hello everyone!
I've not logged on for awhile as I have been so busy with follow up appointments after jawbone replacement surgery in April. I have been seeing a speech therapist several times a week and a swallow expert several times a week plus twice a week I have a massage of the surgical area to reduce scar tissue and increase blood flow. I'm so thankful that my recovery is going so well but I'm exhausted going from one appointment to the other.....I am not complaining!!I also am slowly going off all of my pain meds. prior to the surgery I was taking a lot! A patch, Norco, oxycodone and drinking morphone! Wow! I was in so much pain caused by the disintergration of the jawbone plus all the infections one after another! I had to have someone drive me to the hospital every day for antibiotic infusions etc. etc. etc. You all know what its like! Well coming off the pain meds was NOT easy. It's been hard but I am now only taking a few Norcos now and then. I have found that my low blood pressure (fainting spells) has gone away as I reduced the pain meds. According to my doctors the pain meds can lower blood pressure. It was getting to the point that I was afraid to stand up after sitting for awhile or lying down. All gone now! there are so many reasons when one is so ill to be depressed but I hadn't thought how much the pain meds, although controlling the pain, were also contributing to depression. I still take a mild doses of Lexipro.
So all is going well and I am headed back to Houston for the "debulking" procedure in the middle of September. This is supposed to be an easy procedure lasting only about 2-3 hours and I will be done with that 'goiter" look under my chin! i would like to know how everyone else on this "jawbone reconstruction" discussion board is doing! Look forward to hearing from everyone! Again, if you're uncomfortable commenting or would like to contact me personally my e-mail is marianne2428@yahoo.com I look forward to catching up with you and this topic!
Based upon my last dentist visit, I have yet another loose tooth due to bone loss. This was from the 46 radiation treatments that they zapped me with. I've been doing research on this and reading your story leaves me some hope that I too can get through this phase of my life. I don't know when or if I will really need it, but it is good to read that this procedure isn't the end of the world, or life.
I will talk to my surgeon when I see him in February his feelings on the bone loss and what kind of time frame I might be looking at for this procedure.0 -
8 months post surgery of jawbone replacement
Hello Everyone!
I thought I would post an update of my condition being 8 months post surgery for a jawbone replacement. I am doing great! Everything is going well considering what I have been through for the last 10 years. My jawbone replacement was done the end of april this year (2012) at MD Anderson in Houston and in august I went back for liposuction of my neck. I look pretty good! It's as if I have a double chin and it is little different color than my face since my chin is now my thigh! ha! but I have great makeup which makes it blend in quite well. I'm not in any pain and have been going through a lot of theraphy for speech and swallow! I still have my feeding tube but am taking more and more "blender liquids" with a syringe. I can't move solid food with my tongue being tethered down on both sides ( my tongue is my arm...another ha!) but I can still have a little taste of things doing the syringe thing. I CAN however drink a cup of coffee or tea or whatever using the swallow techniques I've learned in theraphy. The speech and swallow theraphy have been such a blessing. there are some letters of the alphabet that I will never be able to say but if i speak very slowly most everyone can understand me. Women do a better job of understanding than men however! My therapist and I practiced the most important thing.....beinig able to order a starabucks through the drive through! ha! Working with a good therapist is a must for all of us! I also had a lot of Lymphatic Massage theraphy and that really helped with the blood flow in the area! I would highly recommend that.
I still am very high on all the supplements that I take and Dr. Keith Block's Cancer Diet of no meat, no sugar, no dairy! Now I', also taking a mushroom blend as well!
I still have a problem with too much saliva but I've found that carrying a stylish hankie works pretty good! Again.........I would encourage anyone to seek out the very best medical care for oral cancer even if the "travel" is out of your comfort zone! I've made a lot of mistakes in the last 10 years trusting the wrong doctors. Thank God! I found the right one and the right place to be for all my medical treatments from now on!It takes me less time to fly to Houston from Chicago than it took me to drive from the suburbs to downtown Chicago! Good luck to all of you! and God bless and keep you!
Sweetgammy!
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Congratssweetgammy said:8 months post surgery of jawbone replacement
Hello Everyone!
I thought I would post an update of my condition being 8 months post surgery for a jawbone replacement. I am doing great! Everything is going well considering what I have been through for the last 10 years. My jawbone replacement was done the end of april this year (2012) at MD Anderson in Houston and in august I went back for liposuction of my neck. I look pretty good! It's as if I have a double chin and it is little different color than my face since my chin is now my thigh! ha! but I have great makeup which makes it blend in quite well. I'm not in any pain and have been going through a lot of theraphy for speech and swallow! I still have my feeding tube but am taking more and more "blender liquids" with a syringe. I can't move solid food with my tongue being tethered down on both sides ( my tongue is my arm...another ha!) but I can still have a little taste of things doing the syringe thing. I CAN however drink a cup of coffee or tea or whatever using the swallow techniques I've learned in theraphy. The speech and swallow theraphy have been such a blessing. there are some letters of the alphabet that I will never be able to say but if i speak very slowly most everyone can understand me. Women do a better job of understanding than men however! My therapist and I practiced the most important thing.....beinig able to order a starabucks through the drive through! ha! Working with a good therapist is a must for all of us! I also had a lot of Lymphatic Massage theraphy and that really helped with the blood flow in the area! I would highly recommend that.
I still am very high on all the supplements that I take and Dr. Keith Block's Cancer Diet of no meat, no sugar, no dairy! Now I', also taking a mushroom blend as well!
I still have a problem with too much saliva but I've found that carrying a stylish hankie works pretty good! Again.........I would encourage anyone to seek out the very best medical care for oral cancer even if the "travel" is out of your comfort zone! I've made a lot of mistakes in the last 10 years trusting the wrong doctors. Thank God! I found the right one and the right place to be for all my medical treatments from now on!It takes me less time to fly to Houston from Chicago than it took me to drive from the suburbs to downtown Chicago! Good luck to all of you! and God bless and keep you!
Sweetgammy!
I truly am happy for you and a tad jealous at the same time. I would give my left _______(fill in the blank) to be able to drink one of my Mexican coffees. I can smell the coffee and Kahlua. I can see the whipped cream slowly melting on top and making a swirl. ACK! Gotta stop these daydreams. Keep up the good work Gammy.
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CoffeeGeorge_Baltimore said:Congrats
I truly am happy for you and a tad jealous at the same time. I would give my left _______(fill in the blank) to be able to drink one of my Mexican coffees. I can smell the coffee and Kahlua. I can see the whipped cream slowly melting on top and making a swirl. ACK! Gotta stop these daydreams. Keep up the good work Gammy.
As someone that drank nearly a pot of coffee a day, for some reason, I usually choose water when gven the choice today. George, if it's any consulation, it's just not the same as it used to be. Continued success to you, Gammy. I conquered my speech with most of my lower teeth missing and am now feeling back to square one with temporary denture. Seeming like this process is never-ending so it is always good to hear of someone doing well.
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Need some words of encouragement
Hi. I need some words of encouragement. I'm 54yo male diagnoised with state IV tongue/tonsil cancer back in 02/11. I had two weeks of chemo and 37 radiation treatments. Problem I'm have now is with dead bone in my left lower jaw. Had a debridement done but that led to a fracture of my jaw do to weakness in the bone. They have schedule me for surgery. Fabila Free Flap replacement. The whole idea of this surgery has us all scared half to death. I need to know things will get better.
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Next Stepsweetgammy said:jawbone replacement update!
Hello everyone!
I've not logged on for awhile as I have been so busy with follow up appointments after jawbone replacement surgery in April. I have been seeing a speech therapist several times a week and a swallow expert several times a week plus twice a week I have a massage of the surgical area to reduce scar tissue and increase blood flow. I'm so thankful that my recovery is going so well but I'm exhausted going from one appointment to the other.....I am not complaining!!I also am slowly going off all of my pain meds. prior to the surgery I was taking a lot! A patch, Norco, oxycodone and drinking morphone! Wow! I was in so much pain caused by the disintergration of the jawbone plus all the infections one after another! I had to have someone drive me to the hospital every day for antibiotic infusions etc. etc. etc. You all know what its like! Well coming off the pain meds was NOT easy. It's been hard but I am now only taking a few Norcos now and then. I have found that my low blood pressure (fainting spells) has gone away as I reduced the pain meds. According to my doctors the pain meds can lower blood pressure. It was getting to the point that I was afraid to stand up after sitting for awhile or lying down. All gone now! there are so many reasons when one is so ill to be depressed but I hadn't thought how much the pain meds, although controlling the pain, were also contributing to depression. I still take a mild doses of Lexipro.
So all is going well and I am headed back to Houston for the "debulking" procedure in the middle of September. This is supposed to be an easy procedure lasting only about 2-3 hours and I will be done with that 'goiter" look under my chin! i would like to know how everyone else on this "jawbone reconstruction" discussion board is doing! Look forward to hearing from everyone! Again, if you're uncomfortable commenting or would like to contact me personally my e-mail is marianne2428@yahoo.com I look forward to catching up with you and this topic!Hi Gammy. I just found out that the HBO and/or debridement treatments were not successful. I now have a fracture to my left lower jaw that needs dealing with. I was diagnoised almost two years ago with tongue/tonsil cancer. I did two weeks of chemo and 37 radation treatments. Thought I was getting pretty much back to normal (post cancer normal) before I got this latest news. Needlees to say I'm a little unraveled with the whole idea of a major surjery and the recouperation that goes along with it. Looking to hear from those of you who have already gone through this so I can be as prepared as possible.
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USUALLYSam44646 said:Need some words of encouragement
Hi. I need some words of encouragement. I'm 54yo male diagnoised with state IV tongue/tonsil cancer back in 02/11. I had two weeks of chemo and 37 radiation treatments. Problem I'm have now is with dead bone in my left lower jaw. Had a debridement done but that led to a fracture of my jaw do to weakness in the bone. They have schedule me for surgery. Fabila Free Flap replacement. The whole idea of this surgery has us all scared half to death. I need to know things will get better.
they will get better. There is always the chance they won't. I think I am the only unlucky one in this forum that they didn't go right for. I think my main problem was that they couldn't get a good, new blood supply going to the bone graft.
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surgerywrhbounds said:my replacement
Hi
I to had total replacement 5 years now mine was done at the Houston VA I could see MDAnderson out my window. Doing great now but it was no easy road my big sugery 21 hours and a few 4 hour
I still have feeding tube and have lost at least 40 lbs. Still not allowed to eat soft foods.Have had an infection in my throat and can't get a very good answer about what might be going on. Live in Louisiana and get burn out driving back and forth to Houston.
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burn outjohncoon4 said:surgery
I still have feeding tube and have lost at least 40 lbs. Still not allowed to eat soft foods.Have had an infection in my throat and can't get a very good answer about what might be going on. Live in Louisiana and get burn out driving back and forth to Houston.
I do not know how far you are from Houston but I fly in & out same day as Dr appointment but I think Baton Rogue is as close to the east of Houston that they fly. I only drive when I want to and have a hotel room.
As to the FT I know how frustrating it can be and the one thing you don't want to hear it takes time. All infections take time some more than others. I have been going to MdeB for 6 years now and have had many surgeries. Wish I could be more help but from what you have shared best I can do
Bill
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Slow processwrhbounds said:burn out
I do not know how far you are from Houston but I fly in & out same day as Dr appointment but I think Baton Rogue is as close to the east of Houston that they fly. I only drive when I want to and have a hotel room.
As to the FT I know how frustrating it can be and the one thing you don't want to hear it takes time. All infections take time some more than others. I have been going to MdeB for 6 years now and have had many surgeries. Wish I could be more help but from what you have shared best I can do
Bill
My cancer was in jaw so I also had my jaw replaced with fibula in 19 hour surgery. That was 01/2012. Finished rads & Cisplatin 05/12. The radiation got me more than anything. I have lost 65 pounds, weight loss has slowed dramatically the last few months. My feeding tube was removed last June. Think of it as your friend. Nutrition and hydration are key to your success. I was fortunate that I did not need to travel. I have had 3 clean scans since tx finished. Don't lose sight of the goal. God Bless!
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