Information on outcomes of Osteoradionecrosis

HI

I'd be interested to keep in touch with you because I have it too, and it is growing, but there is no pain yet. I'm on low dose anti biotics when it feels like an infection is flaring up. 

Would love to make contact with you to discuss in more detail. The team seem quite reluctant to do much with mine at the moment- on a watch and wait type

Approach. I think I've had it for about a year so far. 

Hi Joosa,

sorry about what you're going through, I too have had ORN and will share my experience with you. In 2007 I was diagnosed with squamous cell carcinoma, unknown primary and was treated with 43 radiation sessions. In 2015 my right lower jaw bone began to die and I had 3 procedures to remove teeth and scrape the bone away in hopes of preserving the blood supply and stopping the orn. In September 2016 the jaw fractured and in October I had right lower jaw replacement surgery. The surgery took the fibula from my left leg, with a flap (blood supply) and replaced the dead bone. Surgery went well and appears to have eliminated the orn. My advice would be to continue what you're doing, but if surgery is necessary there are people who do this work and may be your end solution. If you have any questions, simply ask me. My thoughts are with you. 

Hi brb44

Thank you for replying. Although I wouldnt wish this on anyone I am glad that you can give me some information that i really need and I am sorry you have also been through what im going through as it is totally affecting my life. We have had the same treatment and I guess its highly likely that I will need to have the jaw replacement. I am having a CT scan to see if my bones are suitable for this. Can I ask you how your jaw fractured? Did it just happen? I almost wish mine would to speed up the process as I am in constant pain. I also wondered what kind of pain relief you were you using? Ive tried so many things and still have bouts of excruciating pain. Did you have any hypobaric treatment? Apologies for all the questions but you are the first person I have communicated with regarding this. Many thanks in advance. Julia

Hi there

Yes i would like to keep in touch. I feel like I need sone support from someone going through the same thing although as you are feeling no pain i wouldnt want to worry you. I guess we are all different so who knows how osteoradionecrosis developes in individuals. Mine started after radiotherapy for tonsil cancer but not until about a year after all my treatment stopped (i had full on chemotherapy that was very dibillitating) I noticed what I thought was a bit of tooth as i had all the teeth in my right bottom jaw removed as a precautonary measure before treatment started. It turned out to be a bit of my jaw bone. Since then it had slowly got worse and I have had 3 debridements that i think have made things worse.  I too have been on antibiotics and strong pain relief for quite a long time. I am now awaiting a ct scan to look at my bones for a possible parcial jaw replacement which i am not looking foward to. Its been a very long journey from being diagnosed with tonsil cancer in jan 2014. Happy to keep in contact Kind regards Julia

Hi All

I am 5 weeks out of extensive excision osteoradionecrosis left mandible and reconstruction with fibular free flap

My journey started with diagnosis of primary bot cancer and secondary lymph node in December 15

Jan 16 was left neck dissection to remove the lymph nodes

Feb 16 removal of all wisdom teeth as a safety guard against poss orn from radio/chemo

Mar 16- 6 weeks of chemoradiation

Jaw was still painful after treatment stopped although my consultant said should settle

Aug 16,fracture of jaw which was caused gradually and left me in immense pain

Sep 16 developed ostemylitis in jaw so was treated with daily antiobiotics for 6 weeks but orn still developing

Nov 16 jaw debridement followed by 6 weeks of jaws wired together.no xmas dinner for me.

This didnt work and orn still developing so last case scenario was jaw reconstruction which i had on 4th May and was told it was a success though im not seeing or feeling that at the moment as early stages of recovery.All i know is my leg bloody hurts and jaw/face feels swollen

Im keeping positive though that this is the last thing they can do and recovery is 2/3 months and im hoping by midsummer i'll  be somewhere back to where i want to be

The consultant was very apolegetic that i had developed orn but theres no blame attached.He told me it was a potential side effect and unfortunately i was one of the 10% who got it.

Everything that could go wrong with the treatment did so.....but im still here and have been 12 months clear of the cancer

Orn was something i didnt want or plan on but like everything else on this journey i didnt want or plan on any of it.I got it and i faced up to it

I wish you all well with your orn journeys and please do not hesitate to ask any questions

Much love

Bear

Well done Bear , you certainly have been through the mill and it looks as if its all working out for you . I had lower jaw reconstruction in 2009 and it is all good  i have had no problems to date so keep up the positive spirit . Thanks for sharing the update , good luck .

                                                                     Chris

Thanks Chris

Yes i have and always remember my xonsultant applauding my "stoic" attitude

I think anyone who suffers with h&n cancer and goes through the treatment we have with all the subsequent side effects comes out the other side a special kind of person and i have immense respect for all those people

As we are told at the start of this journey,this treatment is brutal and side effects even more so

As i mentioned in a previous post,we are a breed apart and only those who have been through this can understand

I have read your story Chris and have nothing but complete respect for what you went through and how you have handled it and if i am stoic god knows what you are

All the best and keep pushing forward

Hi Guys

So looks like we have all been through the same stuff and I echo whats been said in that I take my hat off to all of you for going through it all. I wanted to ask if any of you had trouble opening your jaw. I am unable to open it hardly at all so have to put things that are thin in to eat. After Eights are perfect but I cant live on those. It stopped opening after my last infection. I have had many. Would be grafeful of any information on that if possible. Thank you and best wishes

Hi Julia,

very sorry to read you're in constant pain, hope as you go forward this will be reduced or eliminated altogether.

Background, I had 43 radiation treatments in 2007, no chemo because the cancer showed up in my lymph nodes with no indication a primary tumor. I didn't have any dental work prior to radiation, but have been followed by a dr/dentist who specializes in head and neck cancer patients post radiation. in 2015 I began to have gum and teeth issues, bleeding, deep pockets and the beginning of ORN. During 2015-16 I had an extraction, issues continued, next an extraction with a debridgement (removal of dead bone), issues continued,  and then another debridgement. During the first debridgement a large nerve was damaged and my jaw and teeth became permanently numb. In late summer 2016 during a dental exam the xray showed a fracture had occurred and in October I had jaw reconstruction with a fibula flap.

To start with, I had little pain in the beginning and none once the nerve was damaged. The jaw fracture seemed to just happen, but did not break all the way. No pain then either. There was an early recommendation to try HBO, but in my past I had a collapsed lung, so HBO was not an option.

The jaw reconstruction has presented new problems, I lost my ability to swallow and now have numbness extending to include my ear. But it appears the ORN is gone and I was able to keep 3 front teeth on my right side. I'm on a feeding tube, trying to relearn how to swallow, but don't think that will happen for me.

The dental care that monitored me pretty much helped me stay in front of bone loss and when the jaw replacement became necessary,  it wasn't a surprise and the practice had the staff to perform the surgery. The surgery is about 14 hours, one surgeon does the fibula, the other the jaw. I was in the hospital for 16 days and required pt to get the leg working again. But not uncomfortable and my visual appearance isn't much different (hard to believe) and I've had no problems with my leg.

Given your pain. I hope that jaw reconstruction is an option for you because it worked out for me. It easier ti deal with numbness than pain.

I hope this is helpful and if you have other questions please write back. I'm very sorry you're suffering.

Bruce

Hi Julia,

happy to stay in touch. I had the bone slivers come thru my gums too. Originally thought I'd broken a tooth. I live in the US, an hour north of Boston and my wife found the dental team at Tufts for me following radiation. I thought once I'd gotten thru the post radiation period I was good to go. My ent at Dana Farber said at the 5 year mark, I was in the clear.

What no one told me was that there are long term issues because of radiations' damage to skin and blood vessels. Our treatments were different, but I'm telling you this because I believe we need to have a team monitoring us for the rest of our lives. I recently moved my care to a new medical group that had nutrition, speech and swallowing plus dental, ent etc in a Head and Neck Cancer care group.

Not sure where you are, or if you already have these services, but believe they'll continue to make a difference in my life.

Is the CAT scan to check blood flow for the fibula? If yes hope you get a green light. If you have any questions on the surgery don't hesitate to ask.

Bruce