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exposed bone in my mouth (jaw bone)

jwilli
Posts: 9
Joined: Apr 2014

In July/12  I had 2/3 of my tongue removed and built up again with a flap. I had six weeks of radiation. Shortly thereafter, The skin on the botton right of my inner jaw broke away and exposed the bone.  The dr didn't really know how to repair it. Now, it is getting bigger and something must be done....not sure what a repair is difficult. Has this happened to anyone else and what was done? I would relly appreciate hearing from you! Thanks so much!  Also, still can only eat soft foods....anyone else have this??? Any suggetions for helping myself so I csn et more foods???? Miss those staks!!!!!

debbiejeanne's picture
debbiejeanne
Posts: 2299
Joined: Jan 2010

jw, i'm not familiar with this but there are several on here who are.  i'm sure they will chime in when they come on.  wishing you the very best outcome.

dj

jim and i's picture
jim and i
Posts: 1569
Joined: May 2011

I am not familiar either but will keep you in prayer.

Debbie

Hondo's picture
Hondo
Posts: 5667
Joined: Apr 2009

Sorry I too have not seen this before and don't remember anyone having that problem. I hope and pray you will find the right doctor and get him taking care of.

 

PS: Please let us know how you make out in case anyone else might have the same question

 

God Bless

Hondo

longtermsurvivor's picture
longtermsurvivor
Posts: 1768
Joined: Mar 2010

the exposed bone is the single most important thing at the moment.  Solid foods may have to wait until this problem is repaired.  It sounds like you have an area of soft tissue radionecrosis, from damage to the small blood vessels due to radiation.  The other issue that raises itself here is whether there is also bone effected by this, either directly uder this area of exposre, or somewhere else.  I'm not certain who you are seeing that doesn't know what to do about this.  It is true, it can be a pretty difficult situation, but it is'n't as though no one else has ever had it before.  What specialists are seeing you, and in what kind of practice setting?  Have they offered referrral for evaluation?  Honestly, if I had an area like this, I'd just go back and see my ENT oncologist.  He would know exactly what to advise me.

 

best to you

 

Pat

Viilik70's picture
Viilik70
Posts: 57
Joined: May 2012

<p>I absolutely had the same thing after having radiation treatment twice. It actually killed part of the bone in my jaw, so my ENT in St Louis did surgery and cut out all the dead jaw and took part of the pec muscle in my chest and ran it up the side of my neck to the jaw area to get better circulation to this area. I need to go back and have another surgery to replace the bone missing in the jaw. Do not feel like a Lone Ranger now cause I've been through the same thing! I had to put my finger over the hole because it went clear into my mouth and caused anything I drank to come out of the hole in my cheek. If you can't get any answers from your Dr I can get you in contact with my Dr in St Louis. He is the best in my book and has seen many problems like this and deals with them daily. He could definitely get you all fixed up. He is at St Louis University Hospital and he is the head of ENT Dr Mark Varvares. Awesome doctor! I hope you get some help soon and don't sweat it you'll get through this. If i did it anyone can. God bless and you will be in my prayers!</p>

John J

jwilli
Posts: 9
Joined: Apr 2014

You have been through so much more than me! Thank you so much for taking the timeto help me. Luckily, so far as I know, there is no bone damage. I had a  CT scan and am awaiting the results to determine treatment. If there is bone damamge, then I will have to have surgery to remove it. That must have been hellish!!!! How long was the surgery???? How long in the hospital????? Did you have to have a trach????

Keep me posted and I will keep you posted in my prayers!

txpipeliner's picture
txpipeliner
Posts: 5
Joined: Mar 2014

hi jwilli, i had the rite side of upper jaw bone removed due to cancer, the DR., also removed part of palate,i now have a hole in roof of my mouth. if not carefull while drinking water or what ever the liquid will come out my nose.the DR. also did a skingraft on the roof of my mouth. will your DR. do a skin graft to cover the bone? i will always have the hole in the roof of mouth, i had a dentist make dentures with a plug that goes into the hole and that lets me drink some what normal. i will be starting third week of radition tomorrow.

sin9775's picture
sin9775
Posts: 191
Joined: May 2013

I am sorry for responding so late in the game, but I was having difficulties getting on and couldn't respond until today!  I don't know if it is the same thing, but my brother all of a sudden got a bone sticking out of his jaw (inside of his mouth) as well.  His dentist filed it down and consulted with the ENT.  They said that skin would grow over it and not to worry about it.  I did look it up after my brother told me about it, and even though it seems like not too many on here have had this, the article said that it was not uncommon.  The article recommended more than filing it done, however, so I hope my brother's doctors know what they are doing.  It also said tht if it happened once, it may happen again.  Sorry to say.  Have you had it taken care of yet?

 

~S~

wrhbounds's picture
wrhbounds
Posts: 38
Joined: Jan 2013

In 2008 I had total jaw replacement because of the radiation to my left side in 1999 long story short they used what they call a radial flap from my arm. I can only eat soft foods but it's better than a tube 

Good luck

jwilli
Posts: 9
Joined: Apr 2014

I want to sincerely thank all of you who took the time to give me suggestions. What an amamazing group of people you are!  I had a CT scan and am now awaiting the results. What the CT shows will determine the treatment. At this time, the drs feel they will try scraping the bone to see if the skin will regrow over the bone on its own. It will depend on whether or not there is bone damage. I will keep you posted. Once again. many thanks....it means SO much to know others care as they go through cancer too. As of this moment, I am canceer free... I had 1/3 of my lung removed in June/13 because of cancer but ok there so far too. I am praying for all of you too.

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