This sucks - Osteonecrosis of the jaw
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@maggie15 Laryngeal fibrosis. FFS! I really thought my parotid cancer saga was over. But my surgery scars and radiation burn have become more pronounced 15 years later. No idea why. And now, possible MROEAC? Well, if it's from my radiation of days of yore or from my more recent long-term use of Xgeva for MBC, it doesn't matter really. It's just one more thing to stay on top of. Best wishes for your new voice therapy.
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Oh, I am so sorry this is happening — to all of us! Thank you, everyone, for your advice. I am taking a vacation from Xgeva and getting the name of an oral surgeon with experience with ONJ and cancer patients.
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I went to the oral surgeon to have two teeth extracted today and it was revealed that I had a large (one inch) bone fragment that was also loose. It, too, was extracted. It looked like some prehistoric lifeform that emerged from the primordial ooze. This was a development I was not expecting. I have a follow-up with the oral surgeon next week. If it appears that my sinus cavity is in danger of exposure, then he'll send me to another doctor. I didn't bother asking about an ENT referral for my possible osteonecrosis of the external ear canal. One step at a time.
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Oh no! My oral surgeon said that removing all the affected bone is the best way of stopping the rot. When I asked about the possibility of causing further structural damage he told me he also rebuilds maxillofacial areas of people injured in car crashes and suffering from gunshot wounds (he did his fellowship in Detroit.) It seems there are options for rebuilding sinus cavities and all other parts of the skull. A head and neck plastic surgeon can then repair the epidermis if necessary but is often not needed since oral surgeons work beneath the surface. I hope you don't need a referral but it sounds like these docs can do wonders. Fingers crossed that your sinus cavity is not in danger of exposure. Glad to see that your most recent scans show stability.
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@maggie15 Thank you for the encouraging perspective about reconstruction options. If my ONJ advances in spite of the removal of the chunk of dead bone, it's good to know that it's not the end of the road. I was always worried about QOL with ONJ and so far it's been okay. This appointment was the first indication that those okay days might be over, but I have hope that I can weather whatever comes down the pike.
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