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#201175 01-24-2022 05:08 PM
Joined: Jan 2022
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I'm 5 years out from radiation treatments for squamous cell cancer to the base of my tongue. no remission.
that's the good part.
a periodontist who was attempting to patch the receding gum line on a front tooth (it didn't work), pulled a loose molar while he was at it.
that's bad.
the resulting dry socket left me with osteoradionecrosis.
the only course of action offered is the title of this posting.
the only thing I could find on line about what life is like after this horrible proceedure, was a single survey from the U of WA.
no details, just categories.
and, of course, the doctors consistently rated the patients' quality of life higher than the patients did.
I need to hear from someone who has been thru this.
anybody out there?
thank you

Joined: Mar 2002
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Patient Advocate (old timer, 2000 posts)
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Patient Advocate (old timer, 2000 posts)

Joined: Mar 2002
Posts: 4,912
Likes: 52
I know lots of people who have had this done, and I’m also one of them.

I think your first paragraph meant to say recurrence, not remission. Probably an auto spell checker error, I hate those things. Obviously recurrence is the cancer coming back, remission is it going away.

There are few cures for ORN outside of surgery that consistently work. I answered a previous thread on this just recently that talked a bit about hyperbaric oxygen therapy, and also the use of a drug, Pentoxifyline combined with vitamin E that has been shown in some studies to increase the micro vascularization of bone. You can search for my previous posts here and find them. Both ideas have several peer reviewed papers written about them, both have great results in some people but not others. The studies cannot say why. As a result doctors either believe in these ideas or not. The science is not definitive. O2 dives are not always covered by insurance and they are expensive. The lack of coverage is the result of mixed outcomes. There are few downsides. Pentoxifyline is not associated with many negative side effects either, and might be worth a try. It’s an Rx idea, so you need your doc to buy into you doing this. I tried both without the kind of success that would allow me to not ultimately end up having surgery done. So I’ve got experience with all three ideas.

The surgery is called a fibula free flap. It’s a pretty big deal. It can take from 8 to ten hours to do. You want to choose a surgeon and institution that has done a lot of them successfully. They will take a piece of the non load bearing fibula leg bone, and a small pedicule of the muscle surrounding it to get the vascularization that supports it, and after taking out the necrotic part of the mandible, replace it with the section of fibula. Tomorrow I’d be happy to answer any questions you have about the surgery. Mine did not go as well as I hoped, but after an immediate failure, and a second and ultimately third surgery in ten days, it ended up working. I do not think my experience was the norm, and we can discuss why. So food for thought. Talk to your docs, head and neck surgeons not oral surgeons, about their thoughts. Then ask me what else you wish to understand about this. Lots of these surgeries are done every year. It is the “go to” idea, with a high degree of success. Healing or reversing osteoradionecrosis which is essentially dead bone, can only be done occasionally by the other two methods I described when it is very early in its development and small in size. B


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.

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