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osteo radio necrosis

Posted by christina712 @christina712, Sep 26, 2012

I have osteo radio necrosis that appeared 1.5 years following radiotherapy to the left side of my neck for left tonsil cancer with lymph node involvement. Parts of my jaw bone are exposed as have died and the skin in my mouth is receeding. This means the dead bone is infected. So far I have had 4 teeth removed and part of the jawbone to try to heal it and now I have other areas open up and the operaed area is not healing due to poor blood supply to the area which caused it in the first place.
It is very painfull and frightening and I dont know of anyone who has this. Its getting worse each day and I fear I will have to have the whole jaw removed if they cant do anything for it. I would rather die than live with that especially here in Ireland where top quality surgeons and plastic surgeons are thin on the ground. Ive been struggling with this for 2 years now and am attending the dental hospital almost weekly at great financial cost as it is not covered by my health insurance or stamps. Im working to pay the dentists looking after me and in debt over it also and really cant cope any more.Can anyone offer me any help or advice, It is quite a rare side effect and Im not overly confident I am being treated properly for this. Im In Dublin Ireland and from my research we are way behind other countries medically.

Interested in more discussions like this? Go to the Head and Neck Cancers group.

I am very sorry to hear of your situation, it sounds incredibly difficult. I have a couple of questions; is your cancer in remission? Can you travel outside Ireland if something could be found to help?
C

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Yes apparently cancer free. Im having a lot of other health problems as well. I am breathless and weak all the time and have developed a thyroid problem and can barley walk with what I have ben told is MILD arthritis. The cost of being ill and paying doctors ,dentists and pharmacy bills has left me deeply in debt so travelling is not an option financially.

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OK; i was inquiring around to see if anyone i know had ideas or know some other place you might go to for help.

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Try the American Cancer Society, they should be able to direct if nothing else.They recieve billions in donations.

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