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Exposed Bone

kingcole42005's picture
kingcole42005
Posts: 177
Joined: Oct 2010

I just got back from my radiation onco and she says I have exposed bone in my mouth. I had what I thought was a sore that is pretty painful, she said it's bone coming through the skin near my surgical site. I have to have a CT and panoramic xray to make sure it's not cancer in the bone and then go from there. Anyone else have a similar issue? Thanks! Shelly

CivilMatt's picture
CivilMatt
Posts: 3061
Joined: May 2012

Hi Shelly,

Sorry about that, hope the answers work in your favor. Good luck with the coming ct scan and x-ray. I don’t have any answers, just good thoughts for you and your husband.

Stay strong,

Matt

Skiffin16's picture
Skiffin16
Posts: 8100
Joined: Sep 2009

I seem to remember someone else having similar.... Hopefully they'll chime is of their experience.

Sorry for that situation., hopefully they'll have a plan that will fix you up as painlessly as possible.

Thoughts and prayers on the rest,
John

D Lewis's picture
D Lewis
Posts: 1544
Joined: Jan 2010

but my Stanford docs recently mentioned that it was something that could happen, as a late effect of the radiation. They did not say that it would be related to bone cancer. It could be related to osteoradionecrosis. They also said that it could sometimes be completely resolved by a debriding procedure done in the office, and that it would heal up after that.

Good luck. Sending healing thoughts.

Deb

Kent Cass's picture
Kent Cass
Posts: 1747
Joined: Nov 2009

Kingcole- I had this problem on both sides of my mouth in the root area under the back lower teeth, and was causing canker-like sores on both sides of my tongue. My Rad Dr sent me to a Periodontist who ended-up using a micro-grinder to grind away the exposed bone/tooth roots so much that it allowed even my rad-reduced gum tissue to collapse around it, which it actually did okay. Figured mine became exposed just from loss of gum tissue with my rads. Not sure where your exposed bone is, but the discomfort I felt was on the sides of my tongue, rather than the exposed area, itself.

Hope this helps, and this is NOT C, and something can be done to correct.

kcass

George_Baltimore's picture
George_Baltimore
Posts: 303
Joined: Jun 2009

That's been my latest gift from the radiation I had back in 2004. My left mandible became exposed around January of last year. This was not supposed to happen because I had all my teeth pulled before the radiation started. The exposure became bigger and bigger. I don't recall any pain except for the side of my tongue. It became sore from rubbing against the bone all the time like Kent.

Don't rush into mandible removal and reconstruction. Try debridement first. I wasn't given that option and went right into the surgery in June of last year. I would post my picture as an avatar but I don't want to scare anyone. I now have a disfigured face because of this surgery and am worse off than before the surgery.

My ENT surgeons removed the left part of my jawbone and replaced it with a piece of fibula from my right leg. I spent 11hours on the operating table. My left external carotid artery broke and had to be capped off due to calcification buildup in the artery. I had my "temporary" tracheostomy removed before I left the hospital. A couple months later when the stoma was almost completely closed, I could no longer expel mucous from it and I ended up in respiratory distress. They had to reopen the hole while I was fully awake. I never want to go through that experience of burning flesh and pain again. My "temporary" trach is still in place and I have resigned myself to the fact that I will have it the rest of my life.

I've gotten a little ahead of myself. Back to the jawbone replacement. The bone graft failed. They ended up going back in and removing the bone but leaving the titanium plate. Then in October, I ended up having to have that removed because a screw holding the plate in position ended up working itself out of the remaining good piece of jawbone.

It's not my intention of scaring you out of the surgery. My case is probably the exception rather than the rule. There are other people on the board that have had successful surgeries. Oh, one other thing, I can no longer swallow anything. I was having problems before the surgery. I was having my throat dilated every 4 to 6 weeks to keep the radiation stricture open. When I had my jawbone surgery, it was about 6 months before I was dilated again. Now the stricture has become so tight that it won't stay open after it's been dilated.

I wish you luck if it turns out that you have osteonecrosis in your jaw. For your own sake, though, try debridement before you decide on surgery. I hope someone will post their good experiences with the surgery. Take care!

kingcole42005's picture
kingcole42005
Posts: 177
Joined: Oct 2010

I feel so much better after reading your post. LOL! Sorry you had to go through so much, hope your doing better now. Shelly

kingcole42005's picture
kingcole42005
Posts: 177
Joined: Oct 2010

It is exactly like a cancer sore. I have these weird bony protrusions in my mouth, most people don't get them. Anyway it's on one of those. My doc mentioned skin graft and hyperbaric chamber. I feel discomfort when I touch the area, and in my teeth and jaw. I am sure it's not cancer. Just another thing to add to the list of why cancer sucks sooo much!
thank you for your response. Shelly

Mikemetz's picture
Mikemetz
Posts: 353
Joined: Nov 2011

Like George, I had to deal with osteoradionecrosis (ORN "dead bone from radiation"), but to a much lesser extent. About 10% of HNC patents get ORN, and most of those are not chronic--you get one or a few and they heal--with none that follow. My ORN was chronic and started about a year and a half after rads were completed. The progression for me started with the exposed bone protrusions (ulcers)and then progressed to just under my gum line in the area of rad treatments. I've had two teeth extracted, two rounds of hyperbaric oxygen treatments, and a debridement to clean out any shards of dead bone in my gums where the teeth came out. My oral surgeon told me the other day that it appears the debridement has worked, and I will likely avoid the serious problems George has and will go through.

As you say, the ulcers hurt quite a bit when they are coming in--all of sudden one day you feel them. Hopefully, what will happen next is that the healthy tissue will grow back, your pain will diminish, and you will be able to flick out the dead bone with your fingernail--or it'll just detach by itself. I could actually feel when the bone was about to detach--but don't force it, you'll just make it hurt more. The healthy soft tissue will close the ulcer and you'll be fine. As I recall, it takes about 6 weeks from the time you first feel the ulcer until the dead bone comes out.

If the first ulcers heal and you develop more, it then becomes chronic, and treatments become invasive, very painful, and lasting. George described them in lots of detail, and as someone who thought might be heading down that same path--it hurts just to read about it.

Read up on ORN and its progression--but don't get scared by the graphic images you'll find that accompany stories on it--those are extremely rare cases.

Good luck and I hope this ends for you with the first round of ulcers.

Mike

longtermsurvivor's picture
longtermsurvivor
Posts: 1830
Joined: Mar 2010

I had been wondering how u were doing. Glad to hear things going well.

Pat

Rick2924's picture
Rick2924
Posts: 22
Joined: Jan 2010

I finished radiation treatment (7000 Gys to the left mandible) in January 2009 for base of tongue SCC. I have had 2 recurrences since then. The last being at the site of the original tumor which was resected robotically in August 2011. The surgery involved a small portion of my jawbone which they tried to cover with a flap from my cheek. This failed and resulted in an area of necrosis below my last molar. It was very painful, so I know what you're feeling. I had 40 hyperbaric treatments in the hopes that it would heal on its own. It didn't, so they removed the molar and did a partial mandibulectomy in which they only had to remove a small portion of the bone. I then had 10 more hyperbaric treatments. In 2 weeks healthy gum tissue had grown over the surgical site and the pain was gone. Since that procedure, I had another area of exposed bone in the same area. After 2 weeks the bone was mobile. It eventually popped out on its own and healthy gum was growing underneath. My surgeon said that the second area probably healed so quickly because of the 50 hyperbaric treatments. Bottom line, it may not be as bad as you think.
Rick

Skiffin16's picture
Skiffin16
Posts: 8100
Joined: Sep 2009

Hey, nice fish...are you tuning that tuna......

Glad you are doing better, hoping that you are finished with the recurrence gig, and have a long life of fishing ahead of you.

Tight Lines,
John

Greg53's picture
Greg53
Posts: 830
Joined: Apr 2010

Shelly,

Don't know if this is exactly like you have, but at 10 months post tx, I had a bone come thru skin right below gum line on lower jaw. My ENT shaved off some of the exposed bone and said it may take a month to heal up. Sure enuff, after 3 weeks, the skin had grown over it and have had no issues since then. Hoping yours goes the same as mine!

Best
Greg

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