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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@suzannekay753

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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I'am experiencing osteoradionecrosis (ORN)?ENT surgeon found exposed bone and infection. What might come next?
thank you cary

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@carycary

I'am experiencing osteoradionecrosis (ORN)?ENT surgeon found exposed bone and infection. What might come next?
thank you cary

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My wife has osteonecrosis from the drug Fosamax. Not sure where you live, but we live in Scottsdale Arizona. She goes to a doctor who specializes in osteonecrosis named Dr. Broumaund. If you live in the valley, he would be a great choice. If you live elsewhere, I am sure there will be someone who understands this disease.

For Suzy, the osteonecrosis has not progressed since it was first discovered, but requires special care when doing anything with her teeth.

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