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.
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.
Hi @pauley Welcome to the head and neck cancer group. We are all very active except perhaps this specific discussion. If you search on Ameloblastoma there is currently a discussion concerning the surgery to replace a faulty mandible.
Usually with osteoradionecrosis, when it comes to the jaw or mandible as I understand it, the bone dissolves which can lead to an easy fracture. Of course once that happens, it likely will never heal and should be replaced as soon as possible.
What is your status now? Are you getting help and what kind of help?
Hi @pauley Welcome to the head and neck cancer group. We are all very active except perhaps this specific discussion. If you search on Ameloblastoma there is currently a discussion concerning the surgery to replace a faulty mandible.
Usually with osteoradionecrosis, when it comes to the jaw or mandible as I understand it, the bone dissolves which can lead to an easy fracture. Of course once that happens, it likely will never heal and should be replaced as soon as possible.
What is your status now? Are you getting help and what kind of help?
Thanks for your reply. I am getting help. I have a 3rd consultation on July 3rd at VCU to help decide if a plate or a bone rebuild will be my choice. Thank you and I will look for Ameloblastoma boards. God Bless
I now have feeding tube. Ugh GJ I am unable to swallow anything. Very challenging. The worst part for me is the phlegm. I have a phlegm machine that helps suck it up. I have to feed 9 hours daily and am maintaining my weight of 69 pounds. I do my feeding mostly at night and try getting a few in during day but I’m a busy woman. I love to walk and cook for other people. Im hanging in there but like I said before it’s a challenge. I do get worried sometime about what’s going to happen next with this ORN. It is progressive but I understand slow. Thanks for sharing with me.
I now have feeding tube. Ugh GJ I am unable to swallow anything. Very challenging. The worst part for me is the phlegm. I have a phlegm machine that helps suck it up. I have to feed 9 hours daily and am maintaining my weight of 69 pounds. I do my feeding mostly at night and try getting a few in during day but I’m a busy woman. I love to walk and cook for other people. Im hanging in there but like I said before it’s a challenge. I do get worried sometime about what’s going to happen next with this ORN. It is progressive but I understand slow. Thanks for sharing with me.
Sad to hear things are not going well for you. If it’s not the cancer that ends us, it often is the side effects from the treatments that tears us down. As I understand it, the only way to stop osteoradionecrosis is to remove the affected area and have it replaced if possible. But in some cases that isn’t possible either.
I don’t like some of us having to suffer. I take comfort in the knowledge that we don’t have to suffer alone. Hugs out to you.
I now have feeding tube. Ugh GJ I am unable to swallow anything. Very challenging. The worst part for me is the phlegm. I have a phlegm machine that helps suck it up. I have to feed 9 hours daily and am maintaining my weight of 69 pounds. I do my feeding mostly at night and try getting a few in during day but I’m a busy woman. I love to walk and cook for other people. Im hanging in there but like I said before it’s a challenge. I do get worried sometime about what’s going to happen next with this ORN. It is progressive but I understand slow. Thanks for sharing with me.
I had orn surgery a week ago today. I was in the icu until yesterday and am in a regular room now. It was 12 hour surgery and recovery is proving to be very difficult. I did have 6 posts inserted on the bottom in hopes of getting a permanent denture in 4 to 8 months.
I'm being told that the healing is going well. My face and neck are so swollen I look like a cartoon character!
They put the feeding tube in my nose and I have a trake.
Im hoping they will both be out by the weekend and that I can go home. I'm doing swallowing test and the trake is red capped.
This may sound good, however it's been a miserable painful experience.
I will keep you all updated.
God have mercy and bless us all!
I had orn surgery a week ago today. I was in the icu until yesterday and am in a regular room now. It was 12 hour surgery and recovery is proving to be very difficult. I did have 6 posts inserted on the bottom in hopes of getting a permanent denture in 4 to 8 months.
I'm being told that the healing is going well. My face and neck are so swollen I look like a cartoon character!
They put the feeding tube in my nose and I have a trake.
Im hoping they will both be out by the weekend and that I can go home. I'm doing swallowing test and the trake is red capped.
This may sound good, however it's been a miserable painful experience.
I will keep you all updated.
God have mercy and bless us all!
I had orn surgery a week ago today. I was in the icu until yesterday and am in a regular room now. It was 12 hour surgery and recovery is proving to be very difficult. I did have 6 posts inserted on the bottom in hopes of getting a permanent denture in 4 to 8 months.
I'm being told that the healing is going well. My face and neck are so swollen I look like a cartoon character!
They put the feeding tube in my nose and I have a trake.
Im hoping they will both be out by the weekend and that I can go home. I'm doing swallowing test and the trake is red capped.
This may sound good, however it's been a miserable painful experience.
I will keep you all updated.
God have mercy and bless us all!
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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Thank you so much for the info. In 2018 I went to ENT for my tongue cancer surgery. I will ask my dentist for referral.
@eve3lyn, you can also self refer. Here's how to get started: http://mayocl.in/1mtmR63
Hi, I'm Pauly. I have a fractured jaw for radiation in 2021. I don't see anything posted here for quite a few months. Is this still active?
Hi @pauley Welcome to the head and neck cancer group. We are all very active except perhaps this specific discussion. If you search on Ameloblastoma there is currently a discussion concerning the surgery to replace a faulty mandible.
Usually with osteoradionecrosis, when it comes to the jaw or mandible as I understand it, the bone dissolves which can lead to an easy fracture. Of course once that happens, it likely will never heal and should be replaced as soon as possible.
What is your status now? Are you getting help and what kind of help?
Thanks for your reply. I am getting help. I have a 3rd consultation on July 3rd at VCU to help decide if a plate or a bone rebuild will be my choice. Thank you and I will look for Ameloblastoma boards. God Bless
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1 ReactionI now have feeding tube. Ugh GJ I am unable to swallow anything. Very challenging. The worst part for me is the phlegm. I have a phlegm machine that helps suck it up. I have to feed 9 hours daily and am maintaining my weight of 69 pounds. I do my feeding mostly at night and try getting a few in during day but I’m a busy woman. I love to walk and cook for other people. Im hanging in there but like I said before it’s a challenge. I do get worried sometime about what’s going to happen next with this ORN. It is progressive but I understand slow. Thanks for sharing with me.
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Helpful -
Hug
1 ReactionSad to hear things are not going well for you. If it’s not the cancer that ends us, it often is the side effects from the treatments that tears us down. As I understand it, the only way to stop osteoradionecrosis is to remove the affected area and have it replaced if possible. But in some cases that isn’t possible either.
I don’t like some of us having to suffer. I take comfort in the knowledge that we don’t have to suffer alone. Hugs out to you.
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Like -
Helpful -
Hug
1 ReactionI had orn surgery a week ago today. I was in the icu until yesterday and am in a regular room now. It was 12 hour surgery and recovery is proving to be very difficult. I did have 6 posts inserted on the bottom in hopes of getting a permanent denture in 4 to 8 months.
I'm being told that the healing is going well. My face and neck are so swollen I look like a cartoon character!
They put the feeding tube in my nose and I have a trake.
Im hoping they will both be out by the weekend and that I can go home. I'm doing swallowing test and the trake is red capped.
This may sound good, however it's been a miserable painful experience.
I will keep you all updated.
God have mercy and bless us all!
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Helpful -
Hug
1 ReactionThank you for sharing this. I’m So Sorry that you’re going through this and I’m Praying for a Full and Speedy Recovery for You.
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1 ReactionHi @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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Helpful -
Hug
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