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jawbone replacement surgery

sambo7414
Posts: 1
Joined: May 2011

I am scheduled for jawbone replacement in 6 days. I have osteoradionecrosis from intensive radiation 10 yrs ago. Has anyone had this operation where they take out a part of the jawbone and replace it with bone from the fibula (leg)? If so how did it go? How are you now? Do you know of any other options available? The prognosis is bad. Disfigurement, possible loss of speech and ability to swallow as well as other equally negative possibilities. They say that if I don't have the surgery, the jawbone will fracture, cause infection and make future surgery after that even more risky. I am at MD Anderson and have the best surgeons who have done more than 50 of these operations, but am very nervous about going ahead. Any info or personal comments would be be appreciated.

Skiffin16's picture
Skiffin16
Posts: 8290
Joined: Sep 2009

Sorry no information to provide you with, and not sure of anyone that has gone through that. But if there is, I'm sure they'll post soon....

I do want to welcome you to our forum. There are tons of great folks here, with a huge resource of experiences, and history....

Hoping all goes well with your upcoming event, and I can definitely understand your anxiety.

Thoughts and Prayers,
John

Hondo's picture
Hondo
Posts: 6573
Joined: Apr 2009

I am almost in the same boat but not yet in the jaw replacement. My Jaw had a problem with opening, I lived this way for almost 4 years with just ½ of opening. I been using a dynasplint and I am now at 21mm almost 1 inch. My problem is my teeth; if I can’t get the jaw open they will need to do surgery and with that I could lose a lot more then teeth.

I too go to MD Anderson in the H&N department will be there on the 23rd of this month again for follow-up.

Hope you do well my friend and welcome to CSN
Hondo

Scambuster's picture
Scambuster
Posts: 973
Joined: Nov 2009

Sambo,

I have a good friend who had cancer in the jaw and they took about 1" - 1.5" of his lower left jaw and used a part of his pelvis to replace the bone. The only problem he had was he got a staph infection in the hip from where they took the graft bone. The jaw healed up beautifully. He has a 'bald patch' with about 3 teeth missing but it worked like magic.
and is still working fine 10 years later. he didn't get rads.

Just be super cautious with infection as hospitals are reknowned for giving them to us.

Your case is slightly different but this story should cheer you up.

Regds
Scam

lorijeannj
Posts: 3
Joined: May 2011

Hi sambo!
Not sure if you will get this in time, but I do hope all goes well.
I was actually looking for info on this because my brother-in-law just had the same exact surgery on 5/2/2011 for the same exact reason.
In his case, the doctor chose to use the hip bone because in my brother-in-law's situation, it was healthier and less pain during post-op.
The surgery lasted 10 hrs, yes it was long, but there are alot of tiny vessels that needed to be put together.
They did need to place a ventilator in him during surgery to help the breathing process, but took it out soon afterward.
I saw him 2 days after surgery and he was talking. He was in a lot of pain in the hip area but for the first time I did not see him holding his hand to his jaw. So that is a good thing.
He went back into surgery on Friday for about 1 hr due to the fact the hip tissue did not take as well as they thought.
This time they used part of his tongue (the side where most of the dead tissue resided) to get some blood flow back. he woke up to find this out and was not happy because I am not sure he was told this was an option. But he was speaking again with a little slur mostly due to the fact his tongue was repositioned a bit and I am sure the meds didn't help.
But, again he was not holding his hand to his jawbone and had great color.
FYI - no markings were made above the jaw area, in other words his face has no sutures.
He has been cancer free for almost 3 yrs and I am excited for you being cancer free for 10 yrs. That is a blessing.
At this moment, he is awaiting the surgeon to explain why they used part of his tongue for the tissue. The hospital surgeon who assisted said they did not want to do the other hip because of the invaseveness and the fact the first hip did not take.
He was told they might use the fibula as well if the hip didn't look good.
Wish I had more info but we are still awaiting the results of the second surgery and hoping there will not be a third.
The real matter is he is free of cancer, alive and not dying.
Perhaps the surgery did not go as planned, but he is in great care with great surgeons.

lorijeannj
Posts: 3
Joined: May 2011

Hi sambo!
Not sure if you will get this in time, but I do hope all goes well.
I was actually looking for info on this because my brother-in-law just had the same exact surgery on 5/2/2011 for the same exact reason.
In his case, the doctor chose to use the hip bone because in my brother-in-law's situation, it was healthier and less pain during post-op.
The surgery lasted 10 hrs, yes it was long, but there are alot of tiny vessels that needed to be put together.
They did need to place a ventilator in him during surgery to help the breathing process, but took it out soon afterward.
I saw him 2 days after surgery and he was talking. He was in a lot of pain in the hip area but for the first time I did not see him holding his hand to his jaw. So that is a good thing.
He went back into surgery on Friday for about 1 hr due to the fact the hip tissue did not take as well as they thought.
This time they used part of his tongue (the side where most of the dead tissue resided) to get some blood flow back. he woke up to find this out and was not happy because I am not sure he was told this was an option. But he was speaking again with a little slur mostly due to the fact his tongue was repositioned a bit and I am sure the meds didn't help.
But, again he was not holding his hand to his jawbone and had great color.
FYI - no markings were made above the jaw area, in other words his face has no sutures.
He has been cancer free for almost 3 yrs and I am excited for you being cancer free for 10 yrs. That is a blessing.
At this moment, he is awaiting the surgeon to explain why they used part of his tongue for the tissue. The hospital surgeon who assisted said they did not want to do the other hip because of the invaseveness and the fact the first hip did not take.
He was told they might use the fibula as well if the hip didn't look good.
Wish I had more info but we are still awaiting the results of the second surgery and hoping there will not be a third.
The real matter is he is free of cancer, alive and not dying.
Perhaps the surgery did not go as planned, but he is in great care with great surgeons.

lorijeannj
Posts: 3
Joined: May 2011

Sorry about double post.

sweetgammy's picture
sweetgammy
Posts: 24
Joined: Jul 2011

I'm in the same boat for jaw replacement surgery. did you have yours? dow did it go???? I need as much information as I can get about this procedure and the best place to have it done! thanks!

jwilli
Posts: 9
Joined: Apr 2014

I can.t offer suggestions but I was told yesterday that I need the same thing...there was no mention of being disfigured.....go to the plastic surgeon next Tuesday but your surgery will be over....praying for you....be strongstrong

debbiejeanne's picture
debbiejeanne
Posts: 3093
Joined: Jan 2010

jwilli, you should probably start a new post as this is very old and most will overlook it.  i've been on here a couple years and i've never seen a post from the above person so i'm not sure they still get on.

dj

Guzzle
Posts: 698
Joined: Mar 2014

f you open a thread also look at current thread by Mike Metz who is recovering from same thing and there is a post by superhuman nelson ong from Singapore who had procedure 16 months ago and now runs half marathons. I know nothing! But these guys are very knowledgable. Good Luck, G.

hwt's picture
hwt
Posts: 2330
Joined: Jun 2012

My lower jaw was replaced with fibula 01/2012. Matchup wasn't exact. Ask plenty of questions first. Good wishes. 

Mikemetz's picture
Mikemetz
Posts: 394
Joined: Nov 2011

It looks like I'm too late to reply before your surgery, but I just had a mandibular resection on May 1, and am now at home on the mend--for several weeks.  My surgery was 12 hours and complicated post-op with a bad infection.  I spent 3 exta days in ICU.

 

Other than early signs that the site is healing well, it's too soon to know if everything will line up and work later.

 

Since our op dates are so close, let's stay in touch so we can share progress and qeustions to ask the doctors.

 

mike

 

Debi16043's picture
Debi16043
Posts: 50
Joined: Aug 2011

How are you doing?  I had this surgery June 2011 and followed it with radiation which has now killed my jaw Osteoradionecrosis, I have to have the entire procedure again, waiting for date now

 

debra MasseyMassey

MJ70
Posts: 75
Joined: Nov 2010

Debi:  i had a free fibule flap done on my lower left madible feb 2009....surgery went well and had no problems..had great surgeons..  after five years my swallowing had become a problem and i have been getting asperating pneumona a few times and had a few days in the hospital but just had a peg put in to help with that and hope with lots of exercise i will stay out of hosp...I have  emailed Hondo and gotten good information from him.. Will get my mickey button to replase long tube on my Peg.. I have been cancer free for 10.5 years.. I  have had better days my life but happy to still be here enjpying the  time i have left..If you want more help from me please email me   at  mel1940@hotmail.com...Mel 

Aerosmith56
Posts: 4
Joined: May 2016

I'd like to talk about it. Are you still in communication here?

Aerosmith56
Posts: 4
Joined: May 2016

hello

my surgery took place March 2015. I would have liked to have known this chat site was here throughout.

Todd

Nidociv's picture
Nidociv
Posts: 11
Joined: Sep 2009

Hi Todd, haven't been on this site for awhile, but I ran across your post about having the jaw bone replacement surgery. I would like to see if you could tell me how your experience was with this? In May 2015 I had jaw surgery at the Cleveland Clinic for Osteoradionecrosis. They took tissue and vessels from my left thigh, cleaned the dead bone out that needed taken and then placed the tissue over the remaining bone and connected the blood vessels to vessels in my neck for new blood flow. After surgery, I was told they also had to put a titanium plate in because my jaw bone was broken. Well we fiqured the only way it got broke was from an oral surgeon who pulled 4 bad teeth in Oct 2015. When I woke up from those extractions and looked in the mirror, it looked like I had been kicked in the face with steel toed boots. To start all this | started getting infections in June of 2015 and still getting the mouth infection after all this. One month on antibiotics one month off. Back to the surgery I had. Everything healed fine except one spot at the incesion that would not heal. After June's round of antibiotics the hole finally dried up but there was something there, turns out it is titanium sticking out and this is causing one of my blood test to come back very hi (TEST: ESR,SED RATE= Normal Range 0-20,, mine is 69) So my Family DR sent me back to Cleveland. And now they are telling me I need to have my complete jaw bone replaced and a different plate put in. They will take the bone from my leg.For now I just started another round of antibiotics to give me time to decide when I will do this, MY PROBLEM, I know what I went thru with the last surgery, Didn't know it was going to be so tuff and the surgeons are telling me this is a bigger surgery and quite a healing time. Believe it or not, My biggest fear is maybe having to have a trach put in for a few days. So sorry for the long winded writing, but wanted to let you know a little of where I am. I would greatly appreciate your thoughys on this surgery and how you are doing since then. If you want you can also email me at n8kq@att.net   My name is Randy and I live in Lisbon, OH, about 30mi east of Canton. Again Thank You Todd and look forward to hearing from you. Take Care

MJ70
Posts: 75
Joined: Nov 2010

Wanted to add more to my surgery i had 5 years a go on my jaw bone replacement..I lasted about 12 hours and six days in the hopsital...went fast as they  let you have a much pain meds as you wanted and even though i did not need much  i stll took them as time flew...i was up and wlaking the next day on the ealking boot..the lose of my figubula has never been a peoblem...my jaw matches up good and things are pretty much normal for me..might have a little more of a dimple in my  left  side.  but this surgery has never been a problem for me....Good Luck ...Mel

Aerosmith56
Posts: 4
Joined: May 2016

Are you still communicating at this site? I'd like to talk to you about me having similar surgery.

Debi16043's picture
Debi16043
Posts: 50
Joined: Aug 2011

I'm sorry I just saw this post but I'm going thru same thing and I know your post was in 2011 would you share what happened and how are you now?

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