Jaw replacement after radiation

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Jaw replacement after radiation

by friskyfoxie on Tue Jun 18, 2019 03:53 PM

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First, I know your post was from 2015,but I wonder if your doctor has prescribed Salagen for your dry mouth?  Using Biotene mouthwash and toothpaste is also helpful.

I am an eighty year old woman from the US who would like feedback from anyone who has had jaw replacement due to necrosis resulting from radiation.  I survived Stage 4 squamomous head and neck cancer in 1999 with a head and neck dissection and just had a recurrence near my left tonsil last month.  My world famous doctor used robatic surgery to remove the tumor and assures me they got it all.  With all that, I am a walking miracle.

My jaw necrsis is proceeding and a jaw replacement is in my near future.  It is questionable whether even a healthy 80 year old woman can survive an 11 hour surgery.  In addition, I had a horrible experience during my 13 day stay in the hospital for my latest cancer surgery.  I aspirated into my lung and got pneumonia.  I can't tell you how horrible ot was.  The hospital and the personnel were superb, so it was not their fault.

I've had a wonderful life but have had so many procedures and operations to keep me going, almost all related to my mouth.  I am considering refusing the surgery when my jaw breaks and just stop eating.  I think I have been tortured enough and I am really OLD.  

Does anyone have a similar experience.  Thank you

RE: Jaw replacement after radiation

by cedar on Thu Jun 27, 2019 05:16 PM

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In 2009 I had head and neck squamous cancer surgery. They removed my lower jaw at the time and replaced it with a bone from my lower leg. It worked great, but I think the main concern is to get a good blood supply to the bone, otherwise the bone will die. I had radiation to that area and the cancer has not come back. I am 79 and do not want anymore surgery, so I understand your reluctance. Only side effect is that my lip has sunk into my mouth and it made eating and drinking so difficult that I opted for another feeding tube. I kept aspirating and getting pneumonia, so I think the feeding tube will be my source of nutrition from now on. Good luck with whatever decision you make.

RE: Jaw replacement after radiation

by VNVet72 on Tue Jul 02, 2019 01:44 PM

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On Jun 18, 2019 3:53 PM friskyfoxie wrote:

First, I know your post was from 2015,but I wonder if your doctor has prescribed Salagen for your dry mouth?  Using Biotene mouthwash and toothpaste is also helpful.

I am an eighty year old woman from the US who would like feedback from anyone who has had jaw replacement due to necrosis resulting from radiation.  I survived Stage 4 squamomous head and neck cancer in 1999 with a head and neck dissection and just had a recurrence near my left tonsil last month.  My world famous doctor used robatic surgery to remove the tumor and assures me they got it all.  With all that, I am a walking miracle.

My jaw necrsis is proceeding and a jaw replacement is in my near future.  It is questionable whether even a healthy 80 year old woman can survive an 11 hour surgery.  In addition, I had a horrible experience during my 13 day stay in the hospital for my latest cancer surgery.  I aspirated into my lung and got pneumonia.  I can't tell you how horrible ot was.  The hospital and the personnel were superb, so it was not their fault.

I've had a wonderful life but have had so many procedures and operations to keep me going, almost all related to my mouth.  I am considering refusing the surgery when my jaw breaks and just stop eating.  I think I have been tortured enough and I am really OLD.  

Does anyone have a similar experience.  Thank you

You asked about jaw replacement, I had portion of my lower jaw replaced due Squamous Cell Carcinoma (whyI got this is another story since I am not a smoker and drank only socially, but I was in Vietnam-3 long tours back to back)...I am 70yrs young and until this, was in perfectly good health having never been in a hospital..anyway, after the surgery which took almost 14hrs, spent about two weeks in intensive care and another few mos in bed at the hospital, needless to say my body just about shut down..they took a bone from my lower leg to use and a skin graft for reconstructing the gum, so had to learn to swallow, walk n balance again, a long process , lost muscle mass and strength too. After over a year later needed another operation to separate the new gum from the inner lip area, now I am struggling through that, something about blood flow problems maybe, so not sure what comes next. I am telling you this not to scare you nor suggest not to have your procedure, but I hope this will hopefully give you a view as what may be coming your way. Of course everyone reacts different to this things, personally I did not want to hear nor know anything prior to mine...if there is anyone out there with a similar path, I would very much like to know your story, anything we can do or suggest to each other will go a long way in fighting this terrible illness. I wish you all the best .

RE: Jaw replacement after radiation

by VNVet72 on Tue Jul 02, 2019 02:07 PM

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On Jun 27, 2019 5:16 PM cedar wrote:

In 2009 I had head and neck squamous cancer surgery. They removed my lower jaw at the time and replaced it with a bone from my lower leg. It worked great, but I think the main concern is to get a good blood supply to the bone, otherwise the bone will die. I had radiation to that area and the cancer has not come back. I am 79 and do not want anymore surgery, so I understand your reluctance. Only side effect is that my lip has sunk into my mouth and it made eating and drinking so difficult that I opted for another feeding tube. I kept aspirating and getting pneumonia, so I think the feeding tube will be my source of nutrition from now on. Good luck with whatever decision you make.

I had mine about two years ago, same thing, after the op had Radiation, the after effects were difficult and some are still present...after the second one to separate the new gum from the lip area, problems started to show up ( must point out, after the first All was well, no problems present, none.) , so this was and is a disappointment to say the least...about four weeks after the second op a ‘redness ‘ showed in the skin chin area, was initially told that was expected due to a skin graft to the gum, but this did not seem to go away, antibiotics were prescribed since they could now not explain why this redness was present,.. most of the gum area was healing fine except for a small area where top surface jaw bone was visible, they think it maybe due blood flow but are not sure, yet. Now trying to figure out a plan forward.... may I ask if you had some similar problems? Or is there anyone that has had this too...I am in search of some answers or parallels... I dread the idea of more intrusive ops, so any comments or suggestions will very much be appreciated... I am also on a puréed diet, had a peg tube for over a year, now just meeting my nutrition by straw and spoon ...Thank you in advance for any comments.

RE: Jaw replacement after radiation

by friskyfoxie on Fri Jul 05, 2019 07:09 PM

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On Jun 27, 2019 5:16 PM cedar wrote:

In 2009 I had head and neck squamous cancer surgery. They removed my lower jaw at the time and replaced it with a bone from my lower leg. It worked great, but I think the main concern is to get a good blood supply to the bone, otherwise the bone will die. I had radiation to that area and the cancer has not come back. I am 79 and do not want anymore surgery, so I understand your reluctance. Only side effect is that my lip has sunk into my mouth and it made eating and drinking so difficult that I opted for another feeding tube. I kept aspirating and getting pneumonia, so I think the feeding tube will be my source of nutrition from now on. Good luck with whatever decision you make.

Are you in the US or where.  I am curious as to how the health care in various countries treats this surgery.  My doctor has prescribed Pentoxifylline, 400 mgs, am and pm to promote blood flow.  He also has me on 1000 mgs of Vitamin E.  Nevertheless, my jaw problem advances, but who knows how bad it would be without those prescriptions.  Also, have you done swallow therapy and explored what they can do so you can eat normally again.

RE: Jaw replacement after radiation

by friskyfoxie on Fri Jul 05, 2019 07:12 PM

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On Jun 27, 2019 5:16 PM cedar wrote:

In 2009 I had head and neck squamous cancer surgery. They removed my lower jaw at the time and replaced it with a bone from my lower leg. It worked great, but I think the main concern is to get a good blood supply to the bone, otherwise the bone will die. I had radiation to that area and the cancer has not come back. I am 79 and do not want anymore surgery, so I understand your reluctance. Only side effect is that my lip has sunk into my mouth and it made eating and drinking so difficult that I opted for another feeding tube. I kept aspirating and getting pneumonia, so I think the feeding tube will be my source of nutrition from now on. Good luck with whatever decision you make.

Are you in the US or where.  I am curious as to how the health care in various countries treats this surgery.  My doctor has prescribed Pentoxifylline, 400 mgs, am and pm to promote blood flow.  He also has me on 1000 mgs of Vitamin E.  Nevertheless, my jaw problem advances, but who knows how bad it would be without those prescriptions.  Also, have you done swallow therapy and explored what they can do so you can eat normally again. I'm not sure how this message board works, so don't know if you already got this message.

RE: Jaw replacement after radiation

by friskyfoxie on Fri Jul 05, 2019 07:18 PM

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On Jul 02, 2019 2:07 PM VNVet72 wrote:

On Jun 27, 2019 5:16 PM cedar wrote:

In 2009 I had head and neck squamous cancer surgery. They removed my lower jaw at the time and replaced it with a bone from my lower leg. It worked great, but I think the main concern is to get a good blood supply to the bone, otherwise the bone will die. I had radiation to that area and the cancer has not come back. I am 79 and do not want anymore surgery, so I understand your reluctance. Only side effect is that my lip has sunk into my mouth and it made eating and drinking so difficult that I opted for another feeding tube. I kept aspirating and getting pneumonia, so I think the feeding tube will be my source of nutrition from now on. Good luck with whatever decision you make.

I had mine about two years ago, same thing, after the op had Radiation, the after effects were difficult and some are still present...after the second one to separate the new gum from the lip area, problems started to show up ( must point out, after the first All was well, no problems present, none.) , so this was and is a disappointment to say the least...about four weeks after the second op a ‘redness ‘ showed in the skin chin area, was initially told that was expected due to a skin graft to the gum, but this did not seem to go away, antibiotics were prescribed since they could now not explain why this redness was present,.. most of the gum area was healing fine except for a small area where top surface jaw bone was visible, they think it maybe due blood flow but are not sure, yet. Now trying to figure out a plan forward.... may I ask if you had some similar problems? Or is there anyone that has had this too...I am in search of some answers or parallels... I dread the idea of more intrusive ops, so any comments or suggestions will very much be appreciated... I am also on a puréed diet, had a peg tube for over a year, now just meeting my nutrition by straw and spoon ...Thank you in advance for any comments.

I haven't had the jaw replacement yet but as in my previous messages to the other respondents, I suggest you ask your doctor about swallow/speech therapy to help with the eating.  And my doctor also recommends 1000 mgs. of Vitamin E daily along with a.m. and p.m. doses of Pentoxifyllline.  The swallow therapy is helpful as because I am numb down the left side of my jaws as well as my lower lip.  This causes me to "dribble," which is very embarrassing. 

RE: Jaw replacement after radiation

by VNVet72 on Sat Jul 06, 2019 02:22 PM

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On Jul 05, 2019 7:18 PM friskyfoxie wrote:

On Jul 02, 2019 2:07 PM VNVet72 wrote:

On Jun 27, 2019 5:16 PM cedar wrote:

In 2009 I had head and neck squamous cancer surgery. They removed my lower jaw at the time and replaced it with a bone from my lower leg. It worked great, but I think the main concern is to get a good blood supply to the bone, otherwise the bone will die. I had radiation to that area and the cancer has not come back. I am 79 and do not want anymore surgery, so I understand your reluctance. Only side effect is that my lip has sunk into my mouth and it made eating and drinking so difficult that I opted for another feeding tube. I kept aspirating and getting pneumonia, so I think the feeding tube will be my source of nutrition from now on. Good luck with whatever decision you make.

I had mine about two years ago, same thing, after the op had Radiation, the after effects were difficult and some are still present...after the second one to separate the new gum from the lip area, problems started to show up ( must point out, after the first All was well, no problems present, none.) , so this was and is a disappointment to say the least...about four weeks after the second op a ‘redness ‘ showed in the skin chin area, was initially told that was expected due to a skin graft to the gum, but this did not seem to go away, antibiotics were prescribed since they could now not explain why this redness was present,.. most of the gum area was healing fine except for a small area where top surface jaw bone was visible, they think it maybe due blood flow but are not sure, yet. Now trying to figure out a plan forward.... may I ask if you had some similar problems? Or is there anyone that has had this too...I am in search of some answers or parallels... I dread the idea of more intrusive ops, so any comments or suggestions will very much be appreciated... I am also on a puréed diet, had a peg tube for over a year, now just meeting my nutrition by straw and spoon ...Thank you in advance for any comments.

I haven't had the jaw replacement yet but as in my previous messages to the other respondents, I suggest you ask your doctor about swallow/speech therapy to help with the eating.  And my doctor also recommends 1000 mgs. of Vitamin E daily along with a.m. and p.m. doses of Pentoxifyllline.  The swallow therapy is helpful as because I am numb down the left side of my jaws as well as my lower lip.  This causes me to "dribble," which is very embarrassing. 

Thank you for your reply...After my op and Radiation I went through Swallow therapy, physical therapy and wound therapy (skin graft)...also had numbness in op area and still do not have feeling in outer chin area.... after the second op unfortunately I was not prescribed any meds for blood flow.... so I will inquire about this now...Drs want to return me to hospital for further exams and possible treatments.... all the best to you
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