Mandibular resecting

Mikemetz

I was treated for MEC BOT early in 2009 and have been declared NED on every scan since fall 2009.  That's the good (hell, wonderful!) news.  The bad news is that I've more than my share of side effects over the years.  The most serious of them is ORN, which has progressed to me needing my left jaw bone replaced with a bone part taken out of one of my fibulas.  The mandibular resecting is scheduled for May 1, less than 6 weeks away.  As that time approaches and I get myself physically and mentally prepared for the procedure and long recovery, I would like to hear from any of you on CSN who have had this done.  I have a good idea of what the procedure entails, but not what to expect in the short- and long-term afterwards.  If anyone is willing to share your experience, please respond here, or to my PM on CSN.

Thanks.

Mike

 

hwt

Mike

Sorry to hear. I had my left mandible replaced with my fibula in 2012 at Siteman/Barnes in STL. It was a 19 hour surgery, not an issue for me since I was out but very long and hard wait for my family. I was in the hospital 2 weeks, all but the last day in ICU. They kept me in a preplanned induced coma for 2 days following surgery. I remember very little of the hospital but recall every hallucination in detail. I was told that I was swollen up like a balloon. They said the skin graft on my upper thigh would be painful and it was when they changed bandages but only for a few days. When they take your fibula, they take all the flesh and muscle down to it, leaving a deep wide hole. My sister came daily at home to change the dressing because I couldn't reach it. Took several months to heal but not too painful. I used a walker for awhile. My jaw was pretty much healed when I left the hospital. From a pain perspective, drugs did the job. My issue was that when they placed the fibula and titanium, they threw my bite off. Two years later, that is my primary issue. I never had trouble swallowing. My mouth still swells where the flap is when I eat certain foods. I read where Mayo has a new procedure where they don't use the fibula anymore. Worth investigating. They were able to save and use my original hinge. I have some trismus. Wish they had told me about the exercise for jaw. Take as many tongue depressors as you can comfortably put in your mouth. Rubberband or tape them together and use to stretch your mouth for a few minutes several times a day.  Creepy part, in case they don't warn you, is to see hair growing on the flap. Radiation got rid of it 100% but if you won't be getting radiaiton, it can be removed with laser tx. 

My surgery was a major event but my bad memories are the chemo and rads. 

I thought I had the best surgical team but, if I had it to do over, would have chosen differently. 

I had a small dry erase board from the dollar store that helped allot as I was unable to talk in the hospital. Had a trach which was removed the day I came home. Please don't hesitate to msg. me. Prayers coming your way.

Candi

ditto1

hwt said:

Mike

Sorry to hear. I had my left mandible replaced with my fibula in 2012 at Siteman/Barnes in STL. It was a 19 hour surgery, not an issue for me since I was out but very long and hard wait for my family. I was in the hospital 2 weeks, all but the last day in ICU. They kept me in a preplanned induced coma for 2 days following surgery. I remember very little of the hospital but recall every hallucination in detail. I was told that I was swollen up like a balloon. They said the skin graft on my upper thigh would be painful and it was when they changed bandages but only for a few days. When they take your fibula, they take all the flesh and muscle down to it, leaving a deep wide hole. My sister came daily at home to change the dressing because I couldn't reach it. Took several months to heal but not too painful. I used a walker for awhile. My jaw was pretty much healed when I left the hospital. From a pain perspective, drugs did the job. My issue was that when they placed the fibula and titanium, they threw my bite off. Two years later, that is my primary issue. I never had trouble swallowing. My mouth still swells where the flap is when I eat certain foods. I read where Mayo has a new procedure where they don't use the fibula anymore. Worth investigating. They were able to save and use my original hinge. I have some trismus. Wish they had told me about the exercise for jaw. Take as many tongue depressors as you can comfortably put in your mouth. Rubberband or tape them together and use to stretch your mouth for a few minutes several times a day.  Creepy part, in case they don't warn you, is to see hair growing on the flap. Radiation got rid of it 100% but if you won't be getting radiaiton, it can be removed with laser tx. 

My surgery was a major event but my bad memories are the chemo and rads. 

I thought I had the best surgical team but, if I had it to do over, would have chosen differently. 

I had a small dry erase board from the dollar store that helped allot as I was unable to talk in the hospital. Had a trach which was removed the day I came home. Please don't hesitate to msg. me. Prayers coming your way.

Candi

Just wanted

to say hey Mike, I do not know about the procedure but wanted to let you know you will be in our prayers.  You were one of the 1st people to reply to my IS THIS WORTH THE FIGHT posting just about 2 years ago.  And I followed your blog, I will always appreciate you and others who came to my rescue the 1st time I posted.  God Bless

Grandmax4

Can't help you

but, will have good thoughts and be praying for you..

 

lornal

hwt said:

Mike

Sorry to hear. I had my left mandible replaced with my fibula in 2012 at Siteman/Barnes in STL. It was a 19 hour surgery, not an issue for me since I was out but very long and hard wait for my family. I was in the hospital 2 weeks, all but the last day in ICU. They kept me in a preplanned induced coma for 2 days following surgery. I remember very little of the hospital but recall every hallucination in detail. I was told that I was swollen up like a balloon. They said the skin graft on my upper thigh would be painful and it was when they changed bandages but only for a few days. When they take your fibula, they take all the flesh and muscle down to it, leaving a deep wide hole. My sister came daily at home to change the dressing because I couldn't reach it. Took several months to heal but not too painful. I used a walker for awhile. My jaw was pretty much healed when I left the hospital. From a pain perspective, drugs did the job. My issue was that when they placed the fibula and titanium, they threw my bite off. Two years later, that is my primary issue. I never had trouble swallowing. My mouth still swells where the flap is when I eat certain foods. I read where Mayo has a new procedure where they don't use the fibula anymore. Worth investigating. They were able to save and use my original hinge. I have some trismus. Wish they had told me about the exercise for jaw. Take as many tongue depressors as you can comfortably put in your mouth. Rubberband or tape them together and use to stretch your mouth for a few minutes several times a day.  Creepy part, in case they don't warn you, is to see hair growing on the flap. Radiation got rid of it 100% but if you won't be getting radiaiton, it can be removed with laser tx. 

My surgery was a major event but my bad memories are the chemo and rads. 

I thought I had the best surgical team but, if I had it to do over, would have chosen differently. 

I had a small dry erase board from the dollar store that helped allot as I was unable to talk in the hospital. Had a trach which was removed the day I came home. Please don't hesitate to msg. me. Prayers coming your way.

Candi

Halluinations

Not that I want it to happen to anyone, but I sure had hallucinations from my surgery in January.  They also kept me knocked out for a couple of days.  I truly thought the nurses were trying to suffacate me.  And I let the know that I knew what they were doing.  I did apologize to all of them later.  But even today - I vividly remember what I saw and heard during those days.\

(so glad it wasn't just me - hmmm - maybe its Barnes? - or that 6200 OSU?)

CivilMatt

mandibular

Mike,

All I can offer is the best of luck and hope it makes things better for you.

Also, well told story Candi, very real!

Matt

jim and i

Mike, praying all goes well

Mike, praying all goes well during surgery and recovery.

Debbie

Mikemetz

hwt said:

Mike

Sorry to hear. I had my left mandible replaced with my fibula in 2012 at Siteman/Barnes in STL. It was a 19 hour surgery, not an issue for me since I was out but very long and hard wait for my family. I was in the hospital 2 weeks, all but the last day in ICU. They kept me in a preplanned induced coma for 2 days following surgery. I remember very little of the hospital but recall every hallucination in detail. I was told that I was swollen up like a balloon. They said the skin graft on my upper thigh would be painful and it was when they changed bandages but only for a few days. When they take your fibula, they take all the flesh and muscle down to it, leaving a deep wide hole. My sister came daily at home to change the dressing because I couldn't reach it. Took several months to heal but not too painful. I used a walker for awhile. My jaw was pretty much healed when I left the hospital. From a pain perspective, drugs did the job. My issue was that when they placed the fibula and titanium, they threw my bite off. Two years later, that is my primary issue. I never had trouble swallowing. My mouth still swells where the flap is when I eat certain foods. I read where Mayo has a new procedure where they don't use the fibula anymore. Worth investigating. They were able to save and use my original hinge. I have some trismus. Wish they had told me about the exercise for jaw. Take as many tongue depressors as you can comfortably put in your mouth. Rubberband or tape them together and use to stretch your mouth for a few minutes several times a day.  Creepy part, in case they don't warn you, is to see hair growing on the flap. Radiation got rid of it 100% but if you won't be getting radiaiton, it can be removed with laser tx. 

My surgery was a major event but my bad memories are the chemo and rads. 

I thought I had the best surgical team but, if I had it to do over, would have chosen differently. 

I had a small dry erase board from the dollar store that helped allot as I was unable to talk in the hospital. Had a trach which was removed the day I came home. Please don't hesitate to msg. me. Prayers coming your way.

Candi

Hallucinations

Thanks for the great reply--very helpful.  What about dental stuff--did you lose any teeth in the procedure?  If so, how did they get replaced and how long before that could happen?

Were the Grateful Dead playing in the background of your hallucinations?  If so, I've been there already--many many years ago. 

mike

 

 

traceyd1

Fibula Free flap

My husband had this done in Feb. 2012 due to mandibular sarcoma.  We were lucky that he was young (48) and in excellent health otherwise.  He had radiation 8 weeks prior to surgery and none after.  His surgery lasted 18 hours.  He had some complications with blood flow to the flap and required two more surgeries totalling 40 hours over 7 days.  He had a trach and feeding tube.  The trach was removed the day we left the hospital.  His feeding tube (PEG) was removed two months later.  They will remove all the lower teeth on the side that they remove the mandible on.  He just had surgery to begin the dental implant process.  Because his fibula was never radiated, he is a good candidate for implants. 

His wound care was very extensive and lasted several months.  He had a spot where the skin graft didn't take, so that took extra time.  He required wound care on both legs, because his first bone graft died due to poor blood flow.  They had to remove that and use the other fibula a week later.  He has had no other complications since.

His pain was managed well in the ICU with a dilaudin pump.  He was in ICU for 2 weeks and came home with a portable suction machine, as the mucous was thick and bloody for a while.  He used a walker for several weeks.  Two years out, he has very few issues (at least that he complains about).  His speech and eathing are fine, other than dry mouth and loss of taste.  He occasionaly gets some swelling in his legs.

He did experience some hair growth in his mouth.  Not a lot, but since it's a sign of good blood flow and a healthy flap, he really didn't mind.  This will probably be removed with laser when he gets his implants ( he has the posts only right now.) 

 

Good luck with your procedure.  We realized we were going to be just fine about a month after his surgery.  My 8 year old was watching me do the wound care and asked why his dad had those bobo's on his leg.  My husband replied that they had to use a his bone from his leg to make a new jaw.  Without batting an eye, my son looked at him and said, "So now you have a JEG?"  Ladies and gentlemen, we have light at the end of the tunnel from the logic of and 8 year old.

God Bless

Tracey

debbiejeanne

Mike, just wanted you to know

Mike, just wanted you to know I will be praying for you. 

dj

Mikemetz

traceyd1 said:

Fibula Free flap

My husband had this done in Feb. 2012 due to mandibular sarcoma.  We were lucky that he was young (48) and in excellent health otherwise.  He had radiation 8 weeks prior to surgery and none after.  His surgery lasted 18 hours.  He had some complications with blood flow to the flap and required two more surgeries totalling 40 hours over 7 days.  He had a trach and feeding tube.  The trach was removed the day we left the hospital.  His feeding tube (PEG) was removed two months later.  They will remove all the lower teeth on the side that they remove the mandible on.  He just had surgery to begin the dental implant process.  Because his fibula was never radiated, he is a good candidate for implants. 

His wound care was very extensive and lasted several months.  He had a spot where the skin graft didn't take, so that took extra time.  He required wound care on both legs, because his first bone graft died due to poor blood flow.  They had to remove that and use the other fibula a week later.  He has had no other complications since.

His pain was managed well in the ICU with a dilaudin pump.  He was in ICU for 2 weeks and came home with a portable suction machine, as the mucous was thick and bloody for a while.  He used a walker for several weeks.  Two years out, he has very few issues (at least that he complains about).  His speech and eathing are fine, other than dry mouth and loss of taste.  He occasionaly gets some swelling in his legs.

He did experience some hair growth in his mouth.  Not a lot, but since it's a sign of good blood flow and a healthy flap, he really didn't mind.  This will probably be removed with laser when he gets his implants ( he has the posts only right now.) 

 

Good luck with your procedure.  We realized we were going to be just fine about a month after his surgery.  My 8 year old was watching me do the wound care and asked why his dad had those bobo's on his leg.  My husband replied that they had to use a his bone from his leg to make a new jaw.  Without batting an eye, my son looked at him and said, "So now you have a JEG?"  Ladies and gentlemen, we have light at the end of the tunnel from the logic of and 8 year old.

God Bless

Tracey

Thanks

Not the kind of news I wanted to hear, but I do want to be aware of all possibilities, so I am not disappointed if I have the same kinds of extended problems.

 

mike

Viilik70

Mike

I also had part of my jaw removed for the same thing, but they were too worried that putting the bone would be too risky in my case. They opted to do it in two steps instead. I whimped out on them taking the bone out of my leg to add back to the part of the dead jaw they cut out. The jaw surgery was tough but had to be done along with a chest flap to get better blood flow to my jaw bone. My bottom jaw is miss a little part in front of the hinge which makes it hard to eat hard or tough food. My upper and lower jaws no longer line up which also make it harder to chew. I've been told they can make dental implants to help me eat. I don't regret it and I'm not going to lie or sugar coat it, it's tough, but I want you to get the whole story which doctors can't give you cause they haven't lived it. I also will be praying for you brother. Your my hero already for having tenacity to go for it! I just feel like I've been through enough because I've been through rads twice and chemo once. I had cancer SCC at 25 and at 39, so I just want to try to live as normal as I can. Thank you for posting this because it helped me also. Good luck with your surgery and as I said I and many others will keep you in our prayers.

donfoo

How long before it starts up?

What is the general amount of time post tx before ORN starts up? Is there any trends that if one gets past x months/years and no signs of ORN, then one likely dodged that side effect?  It seems the poor blood circulation takes a couple years before doing enough damage to become a major issue.

Viilik70

donfoo said:

How long before it starts up?

What is the general amount of time post tx before ORN starts up? Is there any trends that if one gets past x months/years and no signs of ORN, then one likely dodged that side effect?  It seems the poor blood circulation takes a couple years before doing enough damage to become a major issue.

How long

It took me around a year or less after my second rounds of rads before I had the jaw problems. If you've only been through rads once hopefully you'll never have this problem.

fisrpotpe

donfoo said:

How long before it starts up?

What is the general amount of time post tx before ORN starts up? Is there any trends that if one gets past x months/years and no signs of ORN, then one likely dodged that side effect?  It seems the poor blood circulation takes a couple years before doing enough damage to become a major issue.

no

my understanding after having been diagnosed with it last summer is there is no general time. some happen from direct radiation soon after treatment like the first couple years. mine happened at year 17 4 years after having a tooth extraction. 

i learned more and knew taking care of teeth was important before extration. what i learned is you can not do enough cleaning. 

some ORN developes fast. mine has progressed slowly. surgery will happen at some point. mine was discovered during my teeth cleaning as the break down was seen where the tooth extration happened. 

another gift from the radiation giver!

circulation after months of treatment does not get worse as i understand. 

john 

 

 

debbiejeanne

fisrpotpe said:

no

my understanding after having been diagnosed with it last summer is there is no general time. some happen from direct radiation soon after treatment like the first couple years. mine happened at year 17 4 years after having a tooth extraction. 

i learned more and knew taking care of teeth was important before extration. what i learned is you can not do enough cleaning. 

some ORN developes fast. mine has progressed slowly. surgery will happen at some point. mine was discovered during my teeth cleaning as the break down was seen where the tooth extration happened. 

another gift from the radiation giver!

circulation after months of treatment does not get worse as i understand. 

john 

 

 

what is orn?

what is orn?

Mikemetz

debbiejeanne said:

what is orn?

what is orn?

Osteoradionecrosis (ORN)

"Dead bone from radiation" is the translation.  Because my tumor had involved my left jaw bone, the bone got more rads than is usually the case. The rads can kill the vessels that supply blood to the treated area.  Some vessles come back, some don't.  If enough don't heal, the blood supply to the bone goes below a level needed to keep the bone vital, and ORN develops.  Mine started about 6 months post-rads, with a few very small (pin head sized) painful bone spurs that protruded through the gum line.  Some don't show ORN symptoms until many years later.  Most ORN is acute/temporary, but for a small percentage of folks, it becomes chronic (more and larger bone protrusions over time) and then it's only a matter of time before surgery is the only option.  A common early treatment is hyperbaric oxygen, but its effectiveness is not well documented.  I've had 50 "dives" and no luck against ORN.

Radiation therapy--yet another gift that keeps on giving.

Thanks to all who posted about their experience with the surgery, and to those who have sent words of support.

Mike

 

debbiejeanne

Mikemetz said:

Osteoradionecrosis (ORN)

"Dead bone from radiation" is the translation.  Because my tumor had involved my left jaw bone, the bone got more rads than is usually the case. The rads can kill the vessels that supply blood to the treated area.  Some vessles come back, some don't.  If enough don't heal, the blood supply to the bone goes below a level needed to keep the bone vital, and ORN develops.  Mine started about 6 months post-rads, with a few very small (pin head sized) painful bone spurs that protruded through the gum line.  Some don't show ORN symptoms until many years later.  Most ORN is acute/temporary, but for a small percentage of folks, it becomes chronic (more and larger bone protrusions over time) and then it's only a matter of time before surgery is the only option.  A common early treatment is hyperbaric oxygen, but its effectiveness is not well documented.  I've had 50 "dives" and no luck against ORN.

Radiation therapy--yet another gift that keeps on giving.

Thanks to all who posted about their experience with the surgery, and to those who have sent words of support.

Mike

 

thx mike.  so sorry u r

thx mike.  so sorry u r facing this.  prayers 4 the best outcome.

dj

hwt

debbiejeanne said:

thx mike.  so sorry u r

thx mike.  so sorry u r facing this.  prayers 4 the best outcome.

dj

Mike

Yes, I did lose most all of my lower teeth. They left me 4. Going in, I was told I would lose a few on the bottom but since my actual cancer was in the jaw, they took more for clear margins. I neglected to say, they had to take a nerve. When I came home, I recall feeling disfigured as my mouth was crooked, drooping on one side. it would not close completely on that side and I would drool when I drank.  I can't recall the timeframe, but, it did resolve itself. Doesn't seem that it was more than a few weeks. That edge of my lower lip is always going to be numb but my mouth shuts all the way. Still draws up and goes crooked if I am really stressed.   I mostly drink with a straw but, if I concentrate, can drink from a water bottle or glass. I just find the straw easier. Between surgery and radiation, I had braces put on the 4 teeth to draw them closer to the top so I could eat more foods. I was set for implants and the plan was to put them in the side with the fibula. I did the hyperbaric chamber in anticipation but then has a recurrence so that has taken priority. I do have a temporary denture but because of the bite being off, I struggle to eat with it.  If I had overs, I would ask the surgeon about his success with matching up the bite. That has caused me the most issues. Following surgery, I said I felt like I was carrying a bag of quarters on my lower jaw. With time, it went to a bag of nickels and then not so much but that sensation took a year or more to go away. I have never had alot of pain but do have 24/7 discomfort. I believe all due to not being matched up properly.

 

debbiejeanne

hwt said:

Mike

Yes, I did lose most all of my lower teeth. They left me 4. Going in, I was told I would lose a few on the bottom but since my actual cancer was in the jaw, they took more for clear margins. I neglected to say, they had to take a nerve. When I came home, I recall feeling disfigured as my mouth was crooked, drooping on one side. it would not close completely on that side and I would drool when I drank.  I can't recall the timeframe, but, it did resolve itself. Doesn't seem that it was more than a few weeks. That edge of my lower lip is always going to be numb but my mouth shuts all the way. Still draws up and goes crooked if I am really stressed.   I mostly drink with a straw but, if I concentrate, can drink from a water bottle or glass. I just find the straw easier. Between surgery and radiation, I had braces put on the 4 teeth to draw them closer to the top so I could eat more foods. I was set for implants and the plan was to put them in the side with the fibula. I did the hyperbaric chamber in anticipation but then has a recurrence so that has taken priority. I do have a temporary denture but because of the bite being off, I struggle to eat with it.  If I had overs, I would ask the surgeon about his success with matching up the bite. That has caused me the most issues. Following surgery, I said I felt like I was carrying a bag of quarters on my lower jaw. With time, it went to a bag of nickels and then not so much but that sensation took a year or more to go away. I have never had alot of pain but do have 24/7 discomfort. I believe all due to not being matched up properly.

 

candi, i had cancer of the

candi, i had cancer of the larynx, had 35 rads, then recurrence and had neck dissection and laryngectomy.  my teeth have been off since surgery.  for the first year after surgery i bit my tongue and jaw EVERYTIME i ate.  that has gotten better but i still bite my tongue quite often.  i cannot bite my fingernails (not that i want to) because my teeth don't meet in the middle of my mouth.  it is very bothersome to close my mouth because my teeth are so off center, i mean i can't even explain how off they are.  it has been a real hassle.  i'm learning to live with it but i'll never get used to the bad pain of biting my tongue.

dj

hwt

debbiejeanne said:

candi, i had cancer of the

candi, i had cancer of the larynx, had 35 rads, then recurrence and had neck dissection and laryngectomy.  my teeth have been off since surgery.  for the first year after surgery i bit my tongue and jaw EVERYTIME i ate.  that has gotten better but i still bite my tongue quite often.  i cannot bite my fingernails (not that i want to) because my teeth don't meet in the middle of my mouth.  it is very bothersome to close my mouth because my teeth are so off center, i mean i can't even explain how off they are.  it has been a real hassle.  i'm learning to live with it but i'll never get used to the bad pain of biting my tongue.

dj

dj

Sorry you were affected by a bad bite too. I haven't biten my tongue but that is likely due to so few lower teeth. My surgery resulted in an underbite. Mike, can't stress enough to ask the Surgeon about his skill on matching up.