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Is anyone experiencing osteoradionecrosis (ORN)?

Head & Neck Cancer | Last Active: Dec 3, 2023 | Replies (12)
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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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Replies to "Due to radiation I’ve had the worst time swallowing. It’s been 9 years cancer free. Unfortunately..."
karlm | @karlm | Feb 7 6:33pm

My husband is a larynx cancer survivor. He had electrical stimulation but it didn’t help him. He has a feeding tube for the last 2.5 years.

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suzannekay753 | @suzannekay753 | Feb 8 9:54am

Thank you for sharing. I’ve had feeding tube on 2 occasions. Now the surgeon says it’s too risky to have another tube. I’m going to keep trying with swallow therapy and the stimulation. At least I’ll be trying. We shall see. Right?

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karlm | @karlm | Feb 8 9:35pm

Absolutely! Keep on trying and stay positive. You never know. Our ENT suggested a total laryngectomy in order to eat. My husband is not sure if he wants to go through it. I don’t blame him, but it’s so hard not being to take anything by mouth. May I ask why you had to have the tube removed ? Did you have a PEG tube in?

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suzannekay753 | @suzannekay753 | Feb 21 10:05am

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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