Is anyone experiencing osteoradionecrosis (ORN)?

Posted by suzannekay753 @suzannekay753, Nov 29, 2023

Anyone have skull base free flap reconstruction for ORN

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@suzannekay753

Due to radiation I’ve had the worst time swallowing. It’s been 9 years cancer free. Unfortunately the radiation has caused so much damage I am now dealing with Osteoradioncrosis. January 2023 I had a 12 hour reconstructive. surgery to remove infected tissue and bone which was replaced with new tissue and veins from my arm into my skull base. Quite a surgery I must add. Yuk. For the past several months I have had major problems swallowing and now have thrush.. it’s been over 2 weeks and not getting better. I’ve had one electrical stimulation session. My swallowing seems to be getting worse. M coughing a lot and sometimes I feel like I’m choking. I coughed up a small amount of blood . More pink than red then blew mucus and blood clot from my nose. I don’t know what to do anymore or who to see.

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I do not mind one bit. My first tube was 2013 for radiation and chemo. I found an assisted living facility but they wouldn’t accept feeding tubes. Oncologist said he’d remove it if I ate food and did not loose weight. He removed it. Then last year 2023 I had reconstructive surgery on skull base and they put in a tube. They took it out because I could swallow by turning my head to the left and down. Didn’t last.
Now for the last month( with 2 different meds ) I’m battling thrush and can hardly swallow anything at all. It’s a challenge I have ENT appointment again today. Praying something happens to take care of this.

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Is anyone experiencing osteoradionecrosis (ORN)?ENT surgeon found exposed bone and infection within clivus. Another debridgement surgery again.Is there anyone experiencing ORN?Can hardly swallow anymore. Still ding swallow therapy with electrical stimulation.Sue

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