CSN Login
Members Online: 12

Osteoradionecrosis - ORN

donfoo's picture
donfoo
Posts: 1327
Joined: Dec 2012

After Mike's recent post about ORN and after reading many horror stories about jawbone and teeth failing after radiation, it clicked that what is going on in my mouth could be Osteoradionecrosis. I'm certainly not one to get wound up about various symptoms but after fighting a lot of pain in the gum last week, the imminent 3 day holiday, and my first post tx PET/CT last week, a lot was up in the air but I decided I better get in to the dentist to have a look and get some meds for the long holiday weekend.

First the dentist, then the oral surgeon, looked and poked and said it was not that unusual for some bone/tooth material to come through the jaw tissue in an area where a tooth was extracted. note: tooth was extracted in dec 2012, prior to treaments. They gave me some meds and told me to come back into the office in two weeks. 

I saw my ENT surgeon today who took a look and responded less casually about the exposed bone and said I had better get it looked at. He wants to get the chart and images from the oral surgeon and follow up directly. I assured him I would advise him after the followup visit next week. 

Reverting to Mr Google from time to time, I found a few images of ORN that had me going, "that sure looks a lot like what is going on". Not good. Searching this forum top to bottom only resulted in a page of hits, so it is not that common a topic, even though it seems discussed a lot more.

Here is a link to what OCF writes about ORN.

Thought I would post as other than Mike's recent post, there are few actual member experiences posted on the topic. Hopefully, what I have is not Osteoradionecrosis but between the image and the surgeon's reaction today it surely has me crossing into the "concerned" zone.

Hopefully it is no big deal but figured it would be of interest to the post rad crowd. 

Here is what it looks like so far. Does not seem to be changing much the past week or two. The way the oral surgeon described it was it would heal up pretty quick so seeing no improvement does not feel very comforting either. At least the tissue seems healthy.

Oh well...

 

jim and i's picture
jim and i
Posts: 1683
Joined: May 2011

That doesn't look like a small piece of bone to me. I pray this is really nothing but I think I would be pushing for better answers.

Debbie

longtermsurvivor's picture
longtermsurvivor
Posts: 1836
Joined: Mar 2010

The good news is the tissue looks healthy, not  grey.  Did the tooth come out intact or did  it fragment?  Hoping this is just a fragment  you didn't get out the first time.  Mike has really been through it.  I think he owns the world record for  HBO dives.  And he has had debridement surgery also.  With luck, you will have a quick solution.  ORN is generally a later complication, but heck, there are always us abi-normal outliers.

phrannie51's picture
phrannie51
Posts: 3851
Joined: Mar 2012

Did the tooth come out whole, is did they take a hammer and a chisel to it to get it out?  When I got my dentures, they pulled a lot of teeth at one time.....I had shrapnel coming out for 6 or 7 months afterwards.  The tissue looks all pink and healthy where it's poking through....that would mean the blood supply is good, right?

p

PS....how in the world did you take this pic?  I've met you and I don't believe your phone would fit into your mouth. Laughing

fishmanpa's picture
fishmanpa
Posts: 1131
Joined: Jan 2013

Hey Foo,

I couldn't tell you what that is but if I were to venture a guess, it looks like a bone fragment that migrated to the surface. I too am concerned with what will happen down the road with my teeth. I'd much rather watch HBO than get HBO treatments I assure you! But overall, I'll just go with dentures and take out stock in Fixodent if it comes down to it ;)  Do the follow ups and then as you've done all along, do what you have to do to keep on keeping on. And stay away from Dr. Google!

Positive thoughts and prayers

"T"

PS.... how did you get that photo? It looks like the an alien landscape from the planet pink!

D Lewis's picture
D Lewis
Posts: 1546
Joined: Jan 2010

I suspect that osteoradionecrosis is in many of our futures...

Deb

Ingrid K's picture
Ingrid K
Posts: 811
Joined: Mar 2011

Boy, Don

if I had to wager a guess, I would bet this is a leftover tooth fragment.

I hope that it is nothing more than that.

As Phrannie said, when I had my remaining teeth pulled b4 rads, there were pieces that worked their way out over the next few months (and totally freaked me out as it was during rads)

I was actually thinking that if it was jawbone, it would be a much bigger/sharper piece ?

GOOD LUCK with this.

 

fisrpotpe's picture
fisrpotpe
Posts: 1344
Joined: Aug 2010

i started end of june with very close to same search for this problem. 

my dentist found it after having x rays and panogram xray, three ent's agree'd, oral surgeon did not want to agree with others until i got a CT scan. turns out it was the best view of it was scan. 

the area of my necrosis(ORN) does not have any exposure of piece of tooth, tooth or bone. the good thing with mine is the line or ORN is smooth and not jagged and pieces of bone floating around. so at this point they feel in many ways the progression of ORN has either stoped or slowed way down. 

an area on the other side has almost the same look as your picture. tooth number 18 for me has infection, it would be in the area of the large tooth with the black lines on top in the picture above. the small area above is very simular to what mine looks like. turns out that mine is shown on x rays that it is wisdom tooth that finally showed some tooth. bad thing is the wisdom tooth is 90degrees to the tooth in front. 

the oral surgeon and dentist both agree that the area of necrosis (orn) shows history for my problems as i had that tooth removed almost 4 years ago and now necrosis. so they believe that any tooth /teeth removed with have necrosis most likely to show up approx 4 years after extration. 

necrosis(orn) has no cure or way to stop if it wants to progress. sounds like best would be like mine has done and either stopped or slowed way down. worst for me and they do believe at some point this will happen as surgery will be required. surgery would include removal of necrosis and grafting of bone from bone below the knee in one of the legs. this is a very long and extensive surgery, with a long recovery peroid and with a chance it may not heal. some oral surgeons believe HBO treatments become a part of treatment by surgery with 30 dives prior to surgery and 10 post surgery. 

i visited with head of healing (HBO Director) and asked for paper work that says that HBO works. he said there is no studies with written results that proves it helps. the other good thing is there is no paper work that says it does not work. 

for me now, i am in a continued wait and see with visit to oral surgeon often to keep an eye on it for the necrosis

for the other tooth problem, i will be having next week (not fast enough) root canel. after that they will cut the tooth off near the gum line and mound it with filling. the hope here is that it extends the time before the tooth needs extracted. i have 14 teeth remaining on the lower jaw(mandible) and 3 are already mounded over, 6 have root canals already and 5 left to do root canals. plan is to do all the same, root canals, cut off and mound over. the other hope is to have when all lower teeth mounded over to get dentures and see if they work. 

long story, sorry

short story is more the same..... radiation, the gift that keeps on giving. 

john 

donfoo's picture
donfoo
Posts: 1327
Joined: Dec 2012

LTS - I had two pulled before starting treatment. I know one came out fairly easily and one had my body rocking and bouncing all over the chair! I just love the sound of cracking teeth in the morning, where is Duval now? I don't recollect the dentist handling me a baggie full of broken teeth bits so I am not sure if this one came out cleanly or was even the difficult one to extract.

 

ORN, at this stage seems unlikely but that is why I posted in hopes this might seem familiar to someone out there. 

 

 

P - "shrapnel"? that sounds a bit extreme. LOL The exposed material is very well fixed and not moving even a tiny bit so hopefully it is not the jawbone but will get more info next week. 

 

It is protruding from the side, the picture may not show it that well. The top area is healing and filling in pretty well. 

 

Yes, same phone. LOL The picture was taken with my phone camera. It took a few tries to get the spoon handle pushing the right direction and the thumb on the shutter button just right but I did get it. The image has been cropped to just include the important parts.

 

 

Deb - yeah , don't mean to post anything to set folks on high anxiety alert but this whole radiation post tx side effect thing on the teeth and bones is somewhat unsettling. But it is still great to be alive to have to deal with the issue vs the alternatives. :-)

 

Ingrid - Yep. Hope it is a remnant of the extracted tooth but I would not think it would start popping out the side of the gum and if it did one would think it was loose and then it would wiggle a bit, where this is just solid.

 

John - It does seem ORN appears quite a time after treatment so it does not seem likely to be ORN but your comment that my image looks familiar makes me wonder. 

 

Maybe Mike can weigh in.

 

Will keep 

fisrpotpe's picture
fisrpotpe
Posts: 1344
Joined: Aug 2010

all doc's i talked with said there is no history of necrocis showing up at any point. they said they have seen it within one year and like mine. the history they were talking about with me was that i had history. that being almost 4 years from extraction for me. anyone can have a time table as some will never see it and others very soon after treatment. 

just another unknown that we are keep hearing.... sorry we just don't know 

john 

it would not surprise me with all the new radiation equipment being used in the last 4-5 years that there will be far less chances of necrosis showing up. 

Mikemetz's picture
Mikemetz
Posts: 355
Joined: Nov 2011

When any of my several bone fragments have surfaced, the bone color is dark (b/c it's dead) and the area around it is inflamed from the sharp edges of the dead bone as it moves to the surface.  It REALLY hurts, too.  I don't see any of that in your picture.  That doesn't mean you don't have ORN below the surface, but this doesn't appear to be ORN to my non-expert eye.  A lot of HNC folks get ORN, but the norm is just one or a few small ulcers that give up a small piece of dead bone, and that's it.  Chronic ORN, like mine, is a series of more and larger fragments over a long period of time.  Even after going through a very painful few months that ended three weeks ago with a quarter-inch fragment popping out, and getting some relief, I have already detected a new fragment poking through.  The progression of pain should start again soon and last 2-3 months until this one pops out and I get relief again.  It's that non-ending series of events, and a recent PET scan, that has convinced my docs that the jaw resecting can't be avoided.

As for HBO, I am not convinced that it helped me in any way (it sure didn't help my ORN), and as someone said, the science behind it is very inconclusive.  It is very expensive--my 40 dives cost my insurance compnay over $100,000--and is very intrusive on your daily life (takes about 2.5 hours every day).

mike

 

Viilik70's picture
Viilik70
Posts: 64
Joined: May 2012

I did this also and I'm with Mike that was a whole lot of tv watching and still ended up having jaw surgery in the end...

 

john j

sabriene
Posts: 27
Joined: Aug 2006

Mike, I have been researching & trying to learn all I can regarding the HBO treatment.  Won't go in long detail but at the onset I also had rad. & chemo treatment in 06 then the oncologist wanted all teeth removed before he would start rad. treatment. The oral surgeon they sent me to indicated healing time way to long suggesting not wait.  It was stage IV and things sure didn't look good at that time.  I had taken very good care of my teeth over the years and all were in very good shape.  Did have a bridge on the upper top back side and first thing it completely fell out with what tooth was left.  Then I had not many but some crowns and they all came off and with them needed a couple of roots canals.  Then later a couple more root canals.  One thing I didn't have was any kind of dental insurance.  The dentist I located happen to be a  friend of mind with experience handling cancer of the mouth.  I just was in his office way to much over the dental issue but in order to try and save what teeth I had ended up costing an arm & leg.  Two different oral surgeon indicated at the time they felt I may never be able to wear dentures.  In my situation if I could have worn dentures looking back would have been the right decision.  I will admit at onset sure didn't want to loose my teeth. The dentis also developed a health issue and I went to a new one.  He took a look then inicated you lower back tooth is gone and actually I just came for you to take a look at this tooth where the filling is out.  He felt that tooth just needs to be pulled for it is decaying from the inside out.  So went to Oral surgeon and comment where that tooth is missing lower part needs to be extracted with that other tooth.  However, I will not touch either and you first have HBO treatments.  You have on that one side with tooth mostly missing the start of necrosis.  So he started me on some antibotics, and scheduled me for HBO treatment. 

In the meantime I had been eating mostly a soft diet and still after seven years dealing with a swallowing issue.  Then in June which I never am one night became very sick with up chucking.  This ended up also being a night mare for unknown to me my food was going to the lungs and getting next door to pneumonia.  Lost weight real fast with aspirating, and ended  in hospital for four days with a stomach tube once again.  Like many has indicated this just keeps on giving.  Its seems like at times many of us will put out one fire and two more pop up. 

I have seen a few other in this situation that have question the validity of HBO treatment.  I think posible and could be wrong but the physicians best talking point could be it may help with healing for some after teeth extracted.   Myself really would have to question if it would stop necrosis or stop orn.  I told the oral surgeon I would give him a notarized hold & harmless agreement from any problem or liability if I had down the road got orn and said "no I will not remove any of your teeth until you have HBO treatments period".  Oral surgeon doesn't agree that a good antibotics would do as much good preventing any infection.  I ask the oral surgeon if he could show me in black and white that HBO would stop the necrosis or ORN. His reply was I don't need that for have seen the results myself.  Never once mentioned that maybe it would be good just for the healing process after the extraction of the teeth to get more oxygen in the area. I am sure many will be in defense of the results but all I can find it is still not black & white.  I agree so far the science behind it is very inconclusive.  Guess it kind of like other items dealing with all this could be hell if you don't and hell if you do.  Just seems like it never ends.  I will go check the HBO chamber with the physician in charge Monday and also see about getting another oral surgeons opinion in meantime.

Mike, my prayers are with you and hope you the best for we all are in this together. 

Roger  

Mikemetz's picture
Mikemetz
Posts: 355
Joined: Nov 2011

Roger,

Thanks for your post, and well wishes.  If I can give any support to HBO, I think that it can help when soft tissue needs to be repaired, but once hard bone tissue is past the point of no return, then it's a waste of time and money (your time and the insurance company's money, if you have insurance).  I have read a lot on both sides of whether major dental work should be done before radiation or after it.  My doc let me wait, and am glad I did.  If I had gone through the trouble of having dentures or implants early in the process, I'd be looking at losing them to ORN down the line, anyway.

Unfortunately, all you can do is ask the right questions and get some answers before you make decisions.  If the science is there to inform you and your doc, all the better--but even then, no outcome is certain.

As for asking an HBO doctor about the benefits of that treatment, you need to take their advice with a large grain of salt.  After all, they get to move around and have a life (and get paid) while you lay in the chamber watching hour after hour of ESPN, CNN, or the Weather Channel.  You can't even take in a freakin' book or magazine!

Mike

 

donfoo's picture
donfoo
Posts: 1327
Joined: Dec 2012

Today, about two weeks after the area became exposed, it loosened up and after a few tugs I was able to get it loose from the gum. It does appear to be a tooth fragment left from the extraction. Looks a lot like what Phrannie described in her  post.

Going to oral surgeon this coming Friday if it has not resolved but it seems to be closing over already. 

Hopefully this is just a case of jumping the gun on raditation related dental side effects and really tooth extraction related.  don

ljoy's picture
ljoy
Posts: 90
Joined: Dec 2007

Four years after HNC treatment I had two lower jaw teeth come loose from ORN. I had HBO and oral surgery to remove the teeth. It is my understanding that HBO is not to prevent ORN but restore capillary circulation destroyed by radiation. My oral surgeon said that without HBO the gum and bone would not heal. His protocol was to be sure and remove all the dead bone. In my case that was about half way down. I have a large hole leftt but it healed nicely and no further problems.

A lay person viewing my x-rays could see the dying bone compared to healthy bone. So in your case I would think the doctors should be able diagnose from x-rays what is happening with your jaw.

Hope you get the right diagnosis soon.

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network