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.
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.
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
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
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.
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.
Thank you very much for your comment. I am going to a mayo clinic, live 5 hrs from rochester mayo, that should take care of my. concerns,
just hard waiting for info.....
Have a lot of pain and snapping......
Thank you again
Thank you very much for your comment. I am going to a mayo clinic, live 5 hrs from rochester mayo, that should take care of my. concerns,
just hard waiting for info.....
Have a lot of pain and snapping......
Thank you again
I live about the same distance from Rochester as well. I should expect you will get great care there. I had mandible reconstruction done there four years ago for osteoradionecrosis and so far so good. Happy to answer any questions you might have concerning the procedures.
I live about the same distance from Rochester as well. I should expect you will get great care there. I had mandible reconstruction done there four years ago for osteoradionecrosis and so far so good. Happy to answer any questions you might have concerning the procedures.
They didn’t wire mine shut nor have I ever heard of that being done for this surgery.
I have a titanium strip with expensive screws to hold it all together for healing, and the strip then remains in place forever.
The only downside is it conducts cold in the winter and can be a bit annoying until I warm up my cheek.
I live about the same distance from Rochester as well. I should expect you will get great care there. I had mandible reconstruction done there four years ago for osteoradionecrosis and so far so good. Happy to answer any questions you might have concerning the procedures.
How do you get an appt at Mayo for consult for ORN? I’m having infection in my gum right now. I think I have ORN.I’m 23yrs post radiation treatment for nasopharengeal cancer and in 2018 I had tongue cancer and had surgery at Mayo, Rochester. I live in California but I want to go there.
How do you get an appt at Mayo for consult for ORN? I’m having infection in my gum right now. I think I have ORN.I’m 23yrs post radiation treatment for nasopharengeal cancer and in 2018 I had tongue cancer and had surgery at Mayo, Rochester. I live in California but I want to go there.
Since you had surgery there previously, you have a patient number. Just call that department and tell them what’s going on.
Or you can have your dentist make a referral or your doctor.
I assume you went to Oral maxil in 2018. Just call and ask for that desk. Otherwise a local CT should confirm ORN and from there, forward the information to Mayo.
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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.
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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2 ReactionsI'am experiencing osteoradionecrosis (ORN)?ENT surgeon found exposed bone and infection. What might come next?
thank you cary
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.
Thank you very much for your comment. I am going to a mayo clinic, live 5 hrs from rochester mayo, that should take care of my. concerns,
just hard waiting for info.....
Have a lot of pain and snapping......
Thank you again
I live about the same distance from Rochester as well. I should expect you will get great care there. I had mandible reconstruction done there four years ago for osteoradionecrosis and so far so good. Happy to answer any questions you might have concerning the procedures.
do they wire your jaw shut?
They didn’t wire mine shut nor have I ever heard of that being done for this surgery.
I have a titanium strip with expensive screws to hold it all together for healing, and the strip then remains in place forever.
The only downside is it conducts cold in the winter and can be a bit annoying until I warm up my cheek.
How do you get an appt at Mayo for consult for ORN? I’m having infection in my gum right now. I think I have ORN.I’m 23yrs post radiation treatment for nasopharengeal cancer and in 2018 I had tongue cancer and had surgery at Mayo, Rochester. I live in California but I want to go there.
Since you had surgery there previously, you have a patient number. Just call that department and tell them what’s going on.
Or you can have your dentist make a referral or your doctor.
I assume you went to Oral maxil in 2018. Just call and ask for that desk. Otherwise a local CT should confirm ORN and from there, forward the information to Mayo.
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