Has anyone had a jaw replacement due to ORN osteoradionecrosis. I am a survivor of SCC for ten years. Have had tongue resection, right side nodes removed, 42 radiation treatments, much dental work, $$ and now my crowns are loose only after a year and they tell me I will need surgery to replace the bone. I go monday to a maxillofacial surgeon. The more I research it the scarier it gets. Hyperbaric treatments?? How long of a process is this and what should I expect?
Maria

Maria

The reason that I had to have another bilateral neck disection was that nearly all of my mandible (bottom) jaw had to be reconstructed. ORN had nearly killed all of the circulation in my bottom jaw bone. The plates were put in place to connect the new bone to the back remaining bits of my own jaw and hold the new jaw in place to ensure the bone knitted.

There is still one on either side at the back under my jaw and the one in the centre at the front was removed last October. The one at the front caused me a few problems and had to be removed. As the new bone was in good shape there was no drama in taking that out.

So obviously it totally depends on how much of the bone is damaged as to how much will have to be replaced and reconstructed, but please bear in mind that my case is definitely not a "text book case" as my surgeon keeps telling me!!! Some people have all the luck....... HHmmmm.....

The reason that I will be getting implants is because dentures won't be suitable to my situation. My maxillofacial surgeon will be helping me with the implants - I haven't actually gone into all the details yet but I sure am looking forward to getting to that point.

Regarding your question with eating. I have major issues with eating and they all are caused by the tongue flap that I have and the removal of so much of my tongue.

None of my eating problems are caused by my jaw reconstruction.

Alot of people aren't aware and therefore don't understand that when so much tongue is removed and tongue flaps are built or constructed, the flap is actually stuck down like the floor of our mouth so therefore we are unable to lift it and mobility is totally dependant upon how much has been sewn down and how much of our own tongue we have to control the added on bit, along with various other important issues regarding the way the tongue has been cut and nerves etc. So tongue flap mobility for me is very limited.

Once my tongue flap has been "debulked" and eventually teeth implants are completed I'm hopeful that things will be alot different and eating will be improved considerably.

Best wishes with your appointments

Karen

Hi Maria

I was diagnosed with Osteoradionecrosis (ORN) in 2007. Extensive surgery was performed in April 2008 to reconstruct my mandible (lower jaw) using bone from my hip.

Have you any indication yet of how much of your jaw they need to reconstruct and where they are taking the bone from ??

Radiotherapy had also damaged my tongue flap, so therefore that also had to be reconstructed again using tissue from my hip area. I have had over 1/2 of my tongue removed. As we know everyones situation is different but my surgery took about 14 hours to do.

I met with 3 different Maxillofacial surgeons prior to my operation. It was important to me that I was informed with all the details of any possible complications that could occur. In my experience some surgeons are not good at communicating all the details. Nerve damage around my lip could have been a possibility with me, causing one side of my lip to drop, but thankfully it was avoided.

I have some small metal plates that are screwed in around my reconstructed jaw. There were 3 plates inserted by the maxillofacial surgeon and plastic surgeon during the surgery, but one had to be removed in October last year.

Before the surgery to reconstruct my jaw I had 30 Hyperbaric oxygen treatments which is pretty standard procedure before that kind of surgery.

I hope this helps a little.

Karen