Any thoughts on whether this is a mistake...

My husband has osteoradionecrosis and his jaw has now fractured. The fracture was diagnosed a week ago. He will have a bone resection of appox 33-40% of his mandible and a titanium plate will be inserted in its place. The first date available for surgery is Dec 23, a month from now, but that is two days before Christmas. He chose to postpone until Dec 30, figuring if he has to wait for 5 weeks, he may as well wait for 6 weeks. The surgeon doesn't recommend it, but said that he understands. (He is very much in demand as he is a well known expert in this field, so he is worth waiting for.)

Of course we would rather wait until after Christmas, but does anyone have any thoughts on whether this is a serious mistake?

Ive had this type of surgery. The mandibulectomy was for SCC in my jawbone. The replacement jaw made of tintanium was initially used to replace the jaw bone. My doc allowed me to choose my date of surgery. I chose to have my surgery 2 days after my son's birthday. My doc did give me some guidelines and told me to pick a date that was within a 6 week window. Its a big operation and if it were me, I would do the exact same thing and do it after Christmas. A few days will not make a huge difference.

Is your husband's osteoradionecrosis a result from having some type of oral cancer?

Christine,

Thank you for your information.

You say that they used titanium to "initially" replace the jaw bone... Did you later have a bone graft? My husband will keep the titanium plate as a permanent fix.

Did you have any problem with infection afer the surgery? I just spoke to my neighbor, who is an orthopedic surgeon, and he questions why they are doing the resection and the titanium plate in the same surgery, particularly since there is infection. He thinks that this would cause infection to be introduced to the titanium plate and my husband would then live with infection indefinitely. His thought is why not remove the necrotic bone, allow the infection to clear completely and then add the plate to a clean, infection free field. He said that is what they do in orthopedics. It sounds logical. You seem to know AlOT about these procedures. What are your thoughts on his reasoning? We are going to ask the oral surgeon who will do the surgery and his local oral surgeon (who is not doing the surgery because he doesn't take Medicare) what they think.

Yes, my husband has cancer of the base of the tongue 7 years ago. He has dealt with all kinds of issues since then, but this one is the most complicated. We are hoping that the constant pain will finally be resolved after the surgery.

Thank you again for your help and support!!

Happy Thanksgiving!

Anne

I wouldnt be able to even guess at the reasoning behind what your doctor is proposing. Sorry, I cant help more. I may know alot about this type of surgery but thats cuz I gone thru it. There arent alot of us on here who have had this done. Ive been a member of OCF for over 3 years so I have learned alot from the forum.

I had several complications with my operation. The free flap failed and had to be redone. I was kept asleep for 3 weeks. Then I picked up MRSA while at the rehab center. That made me go back into the hospital where I ended up staying for a total of 2 months. Ive done hyperbaric oxygen treatments, had a picc line with IV antibiotics for 7 months, used a wound vacuum, seen wound care specialists, and had visiting nurses for 11 months. After all that, I wont do another big operation. It was a very very long road for me. What I went thru is rare. Everybody is different and responds differently to medications, treatments, surgeries, etc.

If your husband has an infection is he on antibiotics? Is your husband in alot of pain? Did your husband have radiation? I would recommend getting at least one more opinion before going thru with this operation. Dont cancel the date you have set up but please make sure you speak to another doctor and get their advice before the surgery. Another doctor may suggest something less invasive. A mandibulectomy is a rough operation, it takes a while to bounce back from this. Being an informed patient cant hurt.

Best of luck!!!

Anne,

I see you're in FL what Cancer Center are you going to? We have Moffitt Cancer Center in Tampa and Shands I think it's near Jacksonville. You might want to call them for a second opinion.

Connie

Christine,

Thanks for your information. I will try to answer the questions you asked. I apologize for the length of this reply, but I know that sometimes people might look for this kind of information (I know that I use this board to look for similiar experiences.)

We saw our local oral surgeon and posed the questions of our doctor neighbor to him. He answered all our questions and explained why protocols that work in orthopedic surgery do not work in oral/maxillofacial surgery.

My husband's procedure seems to be a little different than anything that I've found on this forum. There will be no "free flap", as I understand that term...i.e., no transfer of tissue from anywhere else. They plan to make an incision under his jaw on the left side of his face, behind his chin. They will lift the skin up to access the section of the jaw that they will remove. They will cut out the portion that has died and replace it with a titanium thing that looks like a bicycle chain...no bone or other tissue will be moved there. Then, they will sew up the incision. The surgery is supposed to take approximately three hours. They say that no one will be able to tell that there is ajust a titanium piece holding the jaw together. Perhaps the section they expect to have to remove is not as extensive as others have had.

His infection is low grade and it comes and goes. He has been taking penicillin prophylactically since the summer, and he increases the dose when his jaw starts to swell and get red. That calms it down.

He is in a good deal of pain, but he handles it amazingly well. His feeling is that while he can't make it go away, he is not going to let it rule his life. He is on Oxycontin (20 mg, 2 times a day) but still has breakthrough pain, for which he takes 5 mg Oxycodone when necessary. Most days, he is able to keep up with his usual activities, but occassionally, he just goes to bed with his I-Pod in his ears to try to escape the pain. They tell him that the surgery may eliminate the pain, or at least reduce it greatly. We will both be very disappointed if that doesn't happen.

He did have radiation...the cause of all of the problems for him. It was seven years ago.He had no surgery and just a little bit of chemo to enhance the effect of the radiation, which they stopped because he was reacting too strongly to it and they were afraid that he wouldn't be able to complete the radiation.

My husband's surgery will be done by Dr Marx at the University of Miami. He first went there in July 2010. Dr Marx told him that he had two options. One was to continue on antibiotics and pain medication and hope that the jaw does not break. The second option was to have this surgery. He declined to do the surgery unless the jaw actually broke, and his dentist and local oral surgeon agreed. Now, however, the jaw is broken and he really has no option but to fix it. We believe that he is in good hands with Dr Marx as he has done so much of this kind of surgery.

In addition, he has been under the constant (it seems at least weekly) care of a dentist for his teeth (mostly gone now on the bottom) and a local oral surgeon for his extractions and jaw problems. He regularly visits his ENT, who also keeps an eye on the jaw while addressing his recurring thrush problem. He completed 67 HBOT dives between Feb & July of 2010, and we hoped that this treatment might strengthen his jaw. It was too late to save any teeth.

Wow! You have been through unbelievable trials! You have a great spirit and are very generous with your time in helping others through their own trials! Thank you for your continued help for so many others on this forum!!

Anne

Connie,

My husband is going to the University of Miami for his surgery.

I have heard great things about Moffitt and know several people who have gone there for other types of cancer. All were highly impressed with the facility and doctors and very pleased with their treatment. Perhaps we will try to get there to see what they say.

Thanks for your input!

Anne

Anne, thanks for clarifying things for me. When you have time, please add some info for a signature. It helps make it easier to get to know you and also to answer your questions. Its located under the 'my stuff' tab, then profile. Scroll to the bottom and type what you want in the box. Dont worry about medical terms or anything technical, write what you feel is important.

Your husband must be in intense pain. Im surprised he isnt on the fentanyl patch. Its easier to use, only change it every 3 days and it gives a steady amount of medication. Then he could use the oxycodone for any breakthru pain. Ask his doc about this.

The surgery you described is how mine was supposed to go. With using a tiny amount of muscle/skin taken from my wrist area. Unfortunately, my first operation failed and had to be redone. It sounds like this shouldnt be happening with what the surgeon has planned for your husband. He is really is very fortunate with this operation. Im sure he probably cant see how lucky he is due to being in so much pain, but he really is very very lucky. It seems like he should be home and recovering in no time. It sounds like his doctors are on the ball and on top of everything. I might have to take a trip to FL to see this doc.

Ive done a total of 125 HBO on 3 seperate times between April 2008 and Feb 2010. They helped me so much. Sorry that it was too late for it to work for your husband.

I wish the best of luck to your husband with this.

Christine,

You are right...it seems that my husband is fortunate that the extent of his planned surgery is much less than others have undergone. We have been told that they expect him to stay in the hospital for only one or two nights.

He is focusing on getting his weight up in advance of surgery and it seems to be working. His local oral surgeon told him that in addition to adding calories, he should increase his intake of protein, iron and vitamin C to prepare for surgery.

We are feeling pretty good realizing that this is probably one of the less complicated surgeries on their schedule and that he will be physically prepared. As long as there is no infection flare up, he should be in good shape.

We will ask his pain management doctor about the patch when we see him next week.

I added some details to my signature, as you suggested.

Thanks again for your information and concern!

Anne

Update...

Hooray!! My husband's surgery was moved up to Dec 20, because he had a bad infection flare up in the dead jawbone and only surgery would clear it up. Fortunately, they were able to fit him in on the next surgical day after I called them.

His surgery took 4 1/2 hours. They had to take a little more bone than originally thought. They took about 2/3 of the left side of his mandible starting from under his ear. His new titanium plate is longer than that and runs from just below his ear around to the other side of his chin. The added length gives more strength and stability to the plate. He has an incision on his neck from his chin to his ear. He had an advancement flap, and no grafting.

He looks great! His chin area is slightly swollen, but his face looks totally normal otherwise, with no bruising or cuts. Actually, it looks like he had a bit of a face lift in the process...an amusing, but totally unimportant, side benefit!

The pain from the osteoradionecrosis is gone, for the first time in years. He is sore from the surgery itself, but that will be over in another week or so.

So far, it looks like this is a successful surgery with a good outcome. A new, pain free jaw is a great Christmas present!!