Hi All Been a long time. I missed so much ! Sorry everyone for my absence.
My husband is a five year survivor and I have been off the boards for a while. He has necrosis from radiation (at least we hope that is all it is won't know for sure till bioposy during surgery) ANYWAY it seems he is going to be facing a surgery . He is awaiting scheduling. He will have a piece of his jaw bone removed they estimate about 3 cm
and a graft from his fibula. I am not finding a whole lot of information on what to expect post op? How long in the hospital, Recovery, eating etc any info would be appreciated

Geez, I had some surgeries but not that kind, I'm sure someone will be here before long and make the post you want. Good luck to youu both.

Deni,

I was treated for ORN in April 2008. They actually used bone from my hip to reconstruct my jaw bone.

My hip bone was used instead of my fibula because they also needed more tissue to also reconstruct my tongue flap due to damage from the radiotherapy, which going by your signature Bob doesn't have.

Nearly all of my lower jaw was reconstructed, therefore nearly all those teeth/gums were removed. I think they said about 5cm of bone.

I have spoken to some others who recovered very well following their surgery where the fibula had been used, requiring some rehab with walking.

I have several metal thin plates screwed in around my jaw which were put in to hold the new bone in place to ensure that it healed okay. I have since had one of the plates and some screws removed due to an infection that I had from that plate.

I had a trache for about 2 weeks, whilst in the hospital due to the swelling. They actually dissected my neck in the same way that they did during my original operation to remove the tumour and nodes.

My neck is still very tight, but exercises and physio are easing that stiffness. Apparently that is due to the radiated area having to be chopped up again! Damaged scar tissue.

Without teeth eating can be very very difficult, but depending on how many teeth and how much bone they remove will depend on how long he will have to eat soft foods. If Bob doesn't have a tongue flap - that will make things less complicated and should make his recovery much quicker.

Best wishes for the surgery.

Karen

Thanks Karen for sharing every bit of info helps us get prepared!! Jim thanks for the support
Denise

I had my surgery almost exactly a year ago actually...boy time flies. I was in ICU for 2 days and held 8 more observation/recovery. I couldn't leave the Seattle area (procedure done at UW med center) for 30 days and then finally released to go home. I lived a state away from my surgeon so he wanted me close just in case of any complications.

I have weakness in my left leg where they took my fibula and tissue for my flap. I get a little swelling just above my ankle now and again but other then that I walk fine, running is "different", lifting weights (squats but no calf raises) is fine. I have just a hint of a limp, stairs show it mostly.

They replaced the entire right side of my jaw and I lost all of my teeth on the lower right side. They had to wire my jaw shut for two months for alignment issues so all nourishment was by PEG. The removal of the braces was painful, but I don't know if that was normal.

I don't know if any of my info will be of much help as I had my neck dissection, flap and mandiblectomy done at the same time. My primary tumor was huge and removing the damaged tissue and bone compromised my facial nerve, paralyzing the right side of my face, delaying how long it took me to eat, swallow etc...

I can say that afterwards I feel like I'm doing great with all of my issues really being from the facial paralysis which your husband shouldn't have to worry about. If you have any questions I can answer specifically feel free to ask but I really don't know how much to say.

good luck, hope it helps, ask if you need anything

Eric

Thanks Eric ! We just read your post and it was definitely helpful indeed. Congratulations on "a year" the first one is the hardest ..you sound like you are doing "great"! We meet with all the Drs etc soon as Bob FINALLY got an unofficial surgery date of July 2 we are hoping to have that confirmed Monday. I am sure after we talk to them we will have more specific questions. SO appreciate your info and support
Peace
Denise