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Is anyone experiencing osteoradionecrosis (ORN)?

Head & Neck Cancer | Last Active: Sep 16 6:20am | Replies (37)

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Profile picture for William Olsen, Volunteer Mentor @hrhwilliam

Hi @pauley I'm sure by now the thought has gone through your head "What have I done to myself?" or similar. The feeding tube, what a joy that is to deal with. You try to wrap it around your ear during a shower but manage to snag it anyway. Then you get soap in your trach. Ouch! Meanwhile everything hurts. You look in the mirror and you see the Elephant Man!
Amazingly it gets better and it does so rather quickly compared to what got you to this point in the first place. A month from now you will feel a heck of a lot better than you do now. By Halloween you will wish you still looked like you do now, just to scare the kids, haha.
I'm headed up to Mayo Clinic this morning for a five year check up for the same surgery. I have the rather common occurrence of flap tissue growing around my prosthesis, which must be ablated from time to time. I've finally got used to the numbness in my lower lip but still find it difficult to hold a steady note on the bugle. Anyway, better days ahead for you my friend. Courage.

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Replies to "Hi @pauley I'm sure by now the thought has gone through your head "What have I..."

@hrhwilliam
I so appreciate the humor you drop in your comments. I don't see any bugeling in my near future. Lol
Thank you for sharing your experience. They actually took both the trake and feeding tube out this morning. As long as i can eat a purad diet today I may be sent home tomorrow.
I pray all goes well with your check up.
Pauley