Good afternoon,
I am facing surgery in the near future which would remove the dead bone in my right jaw. I currently have osteoradionecrosis of the right posterior lower jaw. In addition, the right jawbone has a pathologic fracture. Also, I have a draining fistula at the ramus of the right jaw. The doctors and the PAs have told me this dead bone needs to be removed as it can be an area that has an increased risk of getting infected-there may be a chronic low grade infection there since I have the chronic fistula drainage. The surgeons plan on just taking the diseased bone and the plastic surgeon does not think I am a good candidate for tibial flap reconstruction due to trismus. The head and neck surgeon said that I would, cosmetically, only have a slight "sunken in" area where the right ramus of the jaw is/was. These are MD Anderson doctors so I feel good about their experience and knowledge.
Has anybody had experience or knowledge of this procedure? My fear is that there will be more extensive osteoradionecrosis than they thought and there will be more functional damage (my speech isn't great, but I can be understood and I am still using a feeding tube, but am diligently working on swallowing). I also wonder about the cosmetic complications-yes we men can be vain, also. Thanks to anybody that can help with their knowledge and advice.

Im very sorry you are facing this type of surgery! Ive been thru it and to be perfectly honest, its not an easy surgery. It can be anywhere from a few hours up thru 10+ hours in the OR. It is very intricate and complex procedure. The doctors can only guesstimate the length of your surgery. Until they get in there they wont know exactly what is required. Most important thing is to remove the dead bone before it gets worse.

There are other options besides taking a piece of leg bone. Other ways are thru a titanium plate or using a piece of cadaver bone.

Have the doctors discussed the Marx Protocol? Its hyperbaric oxygen treatments (HBO) 20 prior to and 10 after the procedure. This helps to avoid osteoradionecrosis.

Ive met several survivors who have had this procedure. Some patients bounced right back and its not noticeable at all. Others have become disfigured. Im one of them. That can be a very difficult thing to mentally conquer. This is more of the exception than the rule, so please dont panic and start worrying even more. The added stress is not helpful to any patient. Just remember, you are still going to be the same person no matter what you look like on the outside. Even with being disfigured, I have a busy life helping others and speaking to children about the dangers of using tobacco.

I would advise you to prepare to take care of your affairs for at least a 2 month window. Set up friends and relatives to stay with you while you are in the hospital. You may not be able to speak, you probably will need a trach. Ask specifically for a possey muir valve trach to make speaking easier. Most patients Ive seen go thru this are in the hospital for at least 10 days to 2 or 3 weeks. Expect drains and staples.

Recovery can be a long one. Ask the doc to assign 2 different pain meds both while in the hospital and for at home. This way if you are in pain, you wont have to wait for a certain time to get relief, you can switch back and forth between the 2 meds. You will need a caregiver to help you at home. Ask if the hospital has visiting nurses or if you would need to go to a "step down" facility for a while before you are up to going home.

Im the type of person who is very honest about what to expect. I hope I have not added any more things to be concerned about by my honesty. Prepare for the worst and hope for the best. Read and educate yourself to help prepare. Using the words either mandibulectomy or osteoradinecrosis in the search field to read posts related to what you are going thru. There have been many threads on each subject.

Good luck!!!

Thanks Christine,
It sounds like you are talking about a reconstruction of the mandible. I am not getting that, just the dead bone taken out. Does that alter your analysis of what I might expect? So, you know of others that have had this procedure done? The surgery sounds so bad that it almost makes me want to see if I can just live with the dead bone, although all the doctors advise against this.

I had ORN in the right mandible and had a partial mandibulectomy in October 2014. The dead bone and four teeth were removed and the fistula track was closed. I spent one night in the hospital and had an uneventful recovery. I was and am on a PEG tube with NPO. Prior to the surgery I did have 30 HBO dives. I decided not to have reconstructive surgery and do have disfigurement, but your surgery is at the ramus, and I can understand that little disfigurement seems possible. Your ORN seems not to have advanced toward the chin as mine did, but your surgery sounds more complicated. I wish you the best.

I can't add anything to what was already said, and have no experience with this particular surgery, just the treated early ORN, but want to wish you well, and show support.

Im sorry, yes I was describing a mandibulectomy which is removing a much larger section of the jaw bone. Hopefully your situation is different with a much smaller area than what I had done. The surgery and recovery all depend on what the surgeons find when they go in. They can give you only a guess after doing all the tests as to how involved your surgery will be. There are always so many variables. Everyone is different and will respond in their own way to surgery, medications, etc.

I have had a small section of my jawbone removed a few years ago. To have this procedure, I needed 20 HBO before and 10 after. My ORN procedure was very minor, it was done right in the oral surgeons office. I declined novacaine or gas to put me to sleep. It was only a very small piece that was removed which hurt like heck for only a minute. Make sure you ask about if you need to do HBO.

ORN is one thing you do NOT want to put off or ignore. It will only get worse and harder to treat as time goes on eventually making treatment impossible. Ive known someone who didnt take care of their ORN when they first found it when it was small. They kept putting it off and were in denial avoiding facing the facts. Unfortunately it was too late when they finally agreed to have the surgery. Over time, they greatly suffered as the ORN became increasingly more painful. Please dont ignore taking care of this, it will only get worse.

Good luck and please keep us posted on your progress.