jaw bone replacement surgery

sweetgammy said:

jawbone replacment
reading this has definitely given me courage and hope. Roger Ebert (the movie critic) and I have the same surgeon here in chicago. His sugery was not successful and he was left with no face at the bottom and is using a computerized voice box. they could not get a good bloof supply.that is my worry! I keep putting it off and am very worried about waiting too long but I am so fearful of the surgery and so sick of hospitals! Please give me some more encouraging words if you don't mind! I'm so terrifed of waking up and having them tell me that it didn't work! or...waiting so long that the surgery is eaven more difficulat and I kill my slim chances of it working because of the double radiation. Am thinking about going to MD Anderson in Houston. What do you think?

Mandible replacement
I talked to yoy earlier about having your mandible replaced and was just wondering if youve had it done yet and how you are making it.

Larryowens said:

Hello......my first post....
I have been reading on this site for the last month and find it reassuring and heart breaking at the same time. I am lucky to survive as well as I have.

I had tonsile cancer 11 years ago, neck dissection and 40 radiation treatments to the neck. I have had the jaw lock ups and use botox to relieve that.

Recently I have had an infection in the left jaw and it won't go away. I now have bone exposure in my cheek low and away from the gum line. I know this all sounds familure.

I will go in for jaw bone surgery on May 2nd. I still do not know what extent the removal will be. I am optomistic but realistic at the same time. Thank you all for sharing your experiences. It is comforting to know I am not alone...Larry

Larry
We tend to collect groups of people at this board that have had less than perfect results. Because of the effect this has on posting, you would be tempted to think that this surgery is very high risk for failure. It is not. It is true that failures which result from this surgery are devastating, but the overall incidence of failure is actually quite low. A question for you, have you had HBO treatments for this area of bone, or conservative surgery, like debridement? You are definitely not alone. With time, somewhere around 10% of us get this type of complication, and your radiation was a fairly long time ago now. I hope things go well for you.

Pat

Mikemetz said:

Debridement success rate?
Pat,

I have a debridement of my left mandible in two days. I am a lot less worried about having this done than I am about it not working--and then I'm looking at a resecting. I've been told or read that there is only a 50% success rate on debridement--another reason for my worry. It sounds like you have other information on that--if so, where did you find it, and what does it say? Also, my docs say it will take 2-3 months to know for sure if the debridement has worked. Is that right? I'm sure I'll have plenty of signs before then, but it would be nice to know what kind of timeline I'll be on after the procedure.

Thanks for any info you can send my way.

Mike

Hi Mikke
I was thinking about you as I reread this thread. I'm hoping things go well for you this week. My understanding of how this works is the same as what you've written above. It is going to take some time to know how things heal. You know, when I had a molar pulled a few years back (I was getting HBO at the time), to my memory it took about six months to completely heal. That is judging from discomfort and how things felt when I probed them with my tongue. This was way longer than the ENT onc and dentist watched me heal, however. A trained observer should be able to tell you you're healing ok with a couple of weeks. This will be just by watching for classic wound healing signs, like appearance of granulation tissue.

Be well.

Greend said:

good case
My best friend's father (probably in late 70's early 80's) just had the surgery. I know thje logistics were tough because they had to drive several fours to the HBO chamber. They just recently (apx month ago) completed the surgery and it went great and two weeks ahead of schedule he is playing golf.

Good luck with it and here is at least one gret success story.

Denny

upcoming surgery
Thanks for the replies. I read about HBO treatments. My surgeon said this was a standard for a long time but he is planning to put me on meds which will help the healing process.
My pre op is next wednesday and I will know more then.

I do realize everyone is different...I have been blessed this far and I try to stay on top of it.
Larry

Larryowens said:

upcoming surgery
Thanks for the replies. I read about HBO treatments. My surgeon said this was a standard for a long time but he is planning to put me on meds which will help the healing process.
My pre op is next wednesday and I will know more then.

I do realize everyone is different...I have been blessed this far and I try to stay on top of it.
Larry

done
Well a week after I am amazed how well it went. one tooth and partial bone removal has left me ready to work and eat the next day. thanks for the support, I wish everyone the same blessings that I have had...Larry

longtermsurvivor said:

so Larry
tel us exactly what the did. You sound good enough it makes one think you didnt end up with the radical surgery. Did you get a trach and ng tube? Did they relocate fibula to jaw? Tell us the good news.


Pat

Debridement
I don't think you had jawbone "removal", Larry. Perhaps it was debridement. I'm not familiar with debridement but I am DEFINATELY familiar with replacement. After replacement you are in ICU for a couple days afterward and then moved to an ENT floor for another 4 or 5 days. After a little physical therapy, you are able to walk around with one of your leg bones removed. You wouldn't be able to work the next day. I believe with debridement, they shave off a little of the dead piece of bone.

Jawbone Surgery
I had part of my lower jaw taken out from being treated with radiation twice and before my surgery I was on morphine 10cc I think and 75mcg fentanol (how ever it's spelled) patch and they moved part of my chest muscle into my neck for better blood flow to this area and since my surgery I'm off all pain meds! Praise God! My lower jaw doesn't line up with my upper jaw because they didn't want to put the bone in from my leg yet, so it's hard to eat. I don't regret it because being off the pain meds are great, but you need to take your time and ween yourself off of them. God bless and good luck!!

my mother is having jaw replacement surgery

she has had head and neck cancer for 4 years now, they said it started from her tonsils. she had a lump at the base of her neck but left alone saying it was a calcium deposit. long story short, she caughed up blood one day and the next day was told she has stage 4 cancer. she had chemo and radiation and it was gone, then a few months later came back to her jaw. had more chemo and radiation and because of the damage it did to her check, all the scar tissue, she also cannot open her mouth and has been on a feeding tube for 3 years, has not eaten anything solid. she is now in the hospital again because of another absess. last year she was in and had 3 teeth removed. now they want to remove the absess and take out part of her jaw, put bone from her leg in and tissue from her thigh. the dr doing it will be dr hallock (bethlehem pa) they said she probably will only be able to open her mouth a little bit more. a little bit more is better then what she has now.

i know the recovery is probably at least 6 months. i was told heavy physical therapy. did you have the surgery? how long after til you were able to chew again?

Wendi77 said:

Mandible Replacement Advice

Hi.

My boyfriend's best friend's Dad is having is lower jaw removed and replaced with a piece of bone from his leg.  He is having all his teeth removed.  I have been reading the succuss stories on here and it is really encouraging.  He is facing a very big operation and all concerned are extremely worried.  He is however having something else done as part of the procedure which nobody seems to have mentioned on here and I just wondered whether anyone had come across it.  He is having the veins in his arms/neck stretched and attached to the new jaw bone as part of the procedure.  As these veins will then become so very tight, it is unlikely that he will be able to raise his arms fully.  I think this worries him greatly and he wonders what quality of life he will have post op.  Has anyone had this part of the procedure or come across it at all.  Thanking you in advance.

Wendi77

I had my mandible replaced (19 hour surgery) 01/2012. I did not have the veins in my arm neck stretched, atleast not that I know of. I could not raise my arm to wash my hair but after a few exercises and a couple of physical therapy sessions, I could raise my arm across my head and touch the opposite ear just as I had prior to surgery. Maybe a month out of surgery I could raise my arm normally. 

sweetgammy said:

jawbone replacement
Hello!
I too need to have a jawbone replacement and like you have lots of pain asociated with infection and bone death. I have been putting it off for about a year now because I can't bear the thought of another hospital stay as well as the danger of having it not take because of being radiated twice. I can tell you however that it is critical to choose the most competent plastic surgeon to do the job. There is a Dr. Blackewell at UCLA who has done ove 1400 of these surgeries. I have contacted him and am very impressed with his record. I intend to go see him this January.
You may also want to look him up. I also would send all my info to Mayo and MD Anderson in Houston.

If you'd like to delay I would suggest the fentanyl patches in addtion to the morphene . I am on both and the pain seems to be under control and I don't believe that that amount is too dangerous. I use a patch of 75. PLease let me know what you decide and if this was helpful. You can e mail me directly at marianne2428@yahoo.com

Good luck in any case! God Bless!

Jawbone

I had oral cancer 2 years ago, had a freeflap surgery on left side of tongue and base of mouth. Went through intensive radiation and chemo. As of today I am still cancer free!

The draw back is now my jaw has broken and degenerated to the point that not even my ENT specialist feels confident in doing the jaw replacement surgery. So now I have to wait on the VA to locate a new specialist. And in the mean time I will be getting a new feeding tube and an aggresive round of antibiotics along with HBO.