necrosis of jaw

dtalbot1 Member Posts: 5
edited November 2017 in Head and Neck Cancer #1

Hello everyone. I am 15 months post treatment for base of tongue cancer . I had a few teeth removed first to prevent issues after radiation. I had radiation plus chemo, my tumor was inoperable stage 3. I developed tooth pain after treatment and it was discovered I had a cracked molar. Radiation is tough on teeth.... I did the whole bit after that. Went through 40 treatments of Hyperbaric Oxygen . I had tooth removed about 6 weeks into HBO. I developed an abcess which cause several more visits to my oral surgeon.I finished several rounds of antibiotics and last 2 weeks of HBO. So now 6 months later I developed a nagging spot in my throat that hurt when I swallowed bread or anything of substance. This occured on the left side, opposite my cancer tumor.Primary Dr. ordered some MRI tests of face and brain . They found an inner ear infection on left side but much more troubling , they found necrosis of my jaw on my right side. I always said throughout my cancer , if there is an adverse side effect I am going to get it.So , yes I am scared. I dont want resection or any disfigurement but will do what I have to do . Is there anyone who has been through this or any insight at all for me ? Much appreciated .                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                            "Life is a game, play it " Mother Theresa


  • RobLee
    RobLee Member Posts: 269 Member
    "If there is an adverse side effect I am going to get"

    Hi Dtalbot, you've been thru a lot... but then, many of the stories I read here involve difficult procedures and complicated recoveries. I'm sorry that I can't help you in your situation, but I do know about ONJ. It is a common side effect of the treatments I am receiving for my other cancer.I wanted to bump your thread up as it had unfortunately not yet received any replies.

    Often it is recommended to take care of any necessary procedures before starting radiation, but I know that there is only so much time and money (primarily time) to get things done before disease progression becomes an issue. I would think that a good oral surgeon should be able to do something for you, perhaps after the bone tissue has begun to regenerate... if it ever does. Unfortuntely disfigurement is a tremendous concern, but nutrition and survivability are even more important. Good luck!

  • caregiver wife
    caregiver wife Member Posts: 234
    necrosis of jaw

    So sorry you are going through all of this.  You do not give any specifics of what is occurring with your jaw, so my answer can only be generic.  Yes, my husband had necrosis of his jaw.  We did have to go to a wound doctor for a while, but he is fine now and has no disfigurement from the necrosis.  Keep us posted and I will watch to see if there is anything further to share.

    Wishing you the very best,


  • Fireman
    Fireman Member Posts: 39
    edited December 2017 #4
    Necrosis of Jaw

    I agree with the last post. Find a good oral surgeon who has experience with and understands osteoradionecrosis of the jaw. Please do not go to a general dentist for this. You MUST go to an oral surgeon who understands raditation to the head and neck. Unfortunately I did not do what I'm asking you to do and it had been 2 years of hell for me. A dentist pulled a molar on my radiated side 7 years after my radiation and it has been a painful nightmare. An experienced oral surgeon can give you direction. Make sure she/he deals with post head and neck radiation patients or can refer you to someone who does. I can only tell you that my cancer was a breeze compared to ORN of the jaw. You may not have much to worry about if you keep trauma from occuring to that side of your jaw. Though it is not as vascular, it is still functioning for you so take care of it so it doesn't degenerate. Good oral hygiene, a good oral surgeon on your side, good nutrition and you most probably will be fine, but let an expert determine that for you. Best wishes to you.