jaw bone replacement surgery

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.

Hello, i was never part of any support groups or forums so did not have a clue how many people with simillar problem is out there. Long story short, my father is 56 and had neck/top of the tounge cancer. He finished chemo/radiation 5 years ago. Since then there is endless problems and proceedures. First few of the back teeth had to be pulled out and with that they 'accidentally' pulled out piece of a bone. That left him with constant infections and a month back the jaw snapped and he had to have half of the lower jaw removed. After consulting several surgeons they do not recomend the reconstruction as the rest of the bone left is not strong enough to support replacement. So the half of the jaw is just left hanging. He did not have a full night sleep since the opp, can't eat, when he talks or does anything he needs to hold it in place. Does anyone has any experience with external support (elastic bands, tape?) or anything that could help or make the day more bareable? Any good medical centers or surgeons in Europe? I don't know anymore where to turn, who to ask. It kills me seing him like this. Please help...

George_Baltimore said:

Wendi
The docs may have used the word stretched but I don't think they meant it quite the way you are envisioning it. In my case, they did a "pectoral flap" to provide a blood supply for the bone they took from the leg. They took part of the muscle and blood supply and moved it up to the jaw area. It has affected the use of my left arm to the point of not being able to bring it fully upward and across my head making it more difficult to comb what little hair I have left. It is still that way a year and a half later but it's not life shattering.

In my case, the operation didn't work and the bone and titanium plate had to be removed. I think there are more people on this forum though where the operation did work.

I am a close companion of a man who is faced with surgery to replace part of his jaw due to ORN. george, i see that you are using a mask. I've wondered whether any of you men have considered trying a false beard? We women have no problem using wigs and hairpieces for hair loss, but I've been unable to find much information about beards for this use.

I had my final surgery for my jawbone replacement in march 2016  have been doing good overall except this week has been horrible my jaw hurts is swollen bottom jaw moves around alot and my teeth no longer line up so its getting hard to eat.went to er tuesday ct scan shows no infection but may have a couple screws loose in the metal in my jaw  what can be done for this help please or what also can cause the swelling and pain that has all of a sudden appeared  thank you 

i have had the jaw replacement surgery in 2014 and they used the bone from my right ankle. this was a 15 hour surgery. this was a very hard surgery and worse than the head and neck surgery that i had in 2009. i have not beenable to eat or drink anything since 2009 and live with a GJ feed tube with a pump. i would never have this surgery again i dont think i could take it! right now im trying to gain wieght and even though i am pumping 3 t0 4 thousand calories in me a day im still not gaining any weight and dont know why. i think that there is cancer somewhere else in my body that is causing this. so i have to go back to my ENT doctors to have me checked over. i also have trouble talking and people cant understand me a lot and really cant understand me on the phone. i also have cronic pain from all the radiation and operations. i guess i have to be thankful i am still alive! the crazy thing is that i was a great Chef before my cancer and now i cant even eat or drink! i had to change my career and was a office equipment tech. until my jaw replacement surgery and had to be let go because of my speech. so now i am on disability.

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.

My father in law is currently in the same boat.  He has had 3 surgeries.  The first was the longest and they went in and removed most of jaw bone on the bottom and all the way up.  They tried to use his leg bone, but due to swelling and diabetes they decided to use the shoulder bone.  That also failed so instead they tried the metal plate  The second and third surgery was to repair his tear that opened up in the metal of the jaw line.  Now we are waiting to hear next step.  He does not want a tongue flap done but the only other choice is to have the metal removed.  Any suggestions?

longtermsurvivor said:

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.

I also live in St. Louis and wonder if you could send me a way to contact your ENT at SLU.

Chuck