Hi, I'm a 65 year old male. I was diagnosed with tonsil cancer in September 2012. Following tonsilectomy, XRT commenced on 27 Dec 2012 (30 fractions IMRT). After completion of treatment a lymph node met wa picked up on the otherside of my neck. I had a selective lymph node resection and 30 more fractions of XRT.Then a large area of necrotic tissue was noticed, leading out of my tonsil bed. Both oral & IV antibiotics failed to shift it.We are now into December 2013. I was then given a 30 dive course of HBO, during which period the necrotic tissue started to break away and by the end of the course, it had all gone.2014 has been pretty good apart form the development of a small discharging lesion under my chin, which did not respond to antibiotics. About 3 weeks ago, the lesion broke down, exposing the tail end of a fistula & fractued mandible(stage 3 ORN). I have seen 2 surgeons from the same team, one appears to be recommending conservative treatment and the other, surgery. From what I have read, chances of successful surgical outcome are improved, if surgery is started early. Now to the point of my post: I have been trying to find data on the surgery involved and the outcomes of the various procedures. I would be grateful if anybody out there has undergone such surgery, could you let me know what it's all about & how you got on.
Kind regards
Big Al

Welcome to OCF! Im sorry to read of everything you have been thru already. You have had a very long road.

Ive been thru ORN. Its much easier to treat it early rather than wait. By waiting it will only continue to deteriorate. You probably will need more HBO before and after surgery. If its a small area you may not need anything to be rebuilt. Larger areas take large pieces of the jaw bone and replace it with sometimes titanium or even a section of the patients own leg bone. Ive even heard of cadaver bones being used sometimes.

Recovery definitely depends on how large of an area is affected. Hospital stays vary too. If all goes well with a small area of ORN you could get lucky enough to have this done as outpatient surgery.

Please let me know if you need any other info. The main OCF pages has info on ORN as well.

Best wishes!

Hi, Big Al, and Welcome to the Forum. Your story sounds so much like my husband's. I agree with Christine that the earlier you begin to address this, the better. Unfortunately, radiation is good at attacking the cancer but does cause damage to healthy tissue.

We know this all too well. One thing to keep in mind is that radiation continues to break down cells long after you stop therapy. We refer to radiation as the gift that keeps on giving. In Clark's case, osteoradionecrosis was responsible for his jaw collapsing and he needed surgery to fix it. Prior to surgery to rebuild the jaw, his bite was completely off. The goal is to preserve as much function as possible. It will be a challenge but one that many here have endured. It is unfortunate but you can do it.

I would seek out a surgeon who has done this procedure many times. Also, radiation makes healing more difficult. Clark is on antibiotics on and off a few times a year to combat infections. In his surgery, they used bone grafts from his fibula to rebuild the jaw. It is a big job but doable. Mu husband will be 71 in a few weeks and this was done when he was about your age.

I feel for you as this is a big deal. But you have many here who will support you and offer tips while you are healing. If I can offer any more help, please PM me if you prefer. On this forum, we all cheer each other on through all kinds of challenges. You have come to the best place for support and info.

My best to you as you move forward�
Anita