Osteoradionecrosis

Jooza
Jooza Member Posts: 1
edited March 2022 in Head and Neck Cancer #1

I've come on here to post a new thread regarding osteonecrosis as there only seems to be older stuff in the hope that I can get some recent information. After having squamous cell carcinoma (cancer in tonsil) I have been living with osteoradionecrosis of right lower jaw. I have had 3 debridements but the bone is still slowly decaying. My consultant is not keen on Hyperbaric Treatment. I have continuous infections and was on pregabelin for 3 months but have weaned myself off of it due to multiple side effects. Just wondered if anyone has had similar situation and what they have done about it. Many thanks 

Comments

  • Mavish
    Mavish Member Posts: 93 Member
    #2

    I had right tonsil SCC. Now I have big necrosis in the upper jaw. So big that the surgeon did not want to touch. Two of my tweeth just drop since the bone could not hold them ( they call it self extraction) I went through two sets of hyperbaric treatments (almost 70 dives). It is hard to say if it worked or not, but issue is still there. However , I do not know what would have been the situation if did not have that treatments. It is boring to stay in the tank approx 2 hours a day, but other than that it did not create any discomfot.

    Until 6 mo ago I was having frequent infections they were keep coming back following antibiotic treatments. Six mo ago I started seeing an oral pathologist (my new dentist refered me to her). She put me on long term Doxycycline and applying a type of lazer treatment. I have still an exposed bone, but mucosa is healing and started covering the necrotic bone. We hope that when (if) mucosa covers the bone, I will not have bone infections.

    I did not have any infection since I started this treatment. My dentist and oncologist saw an improvement in how it looks. Fingers crossed.

    I also find coconut oil and vitamin E helpful when I feel any irritation. I just pock the vitamin E gel capsules and add the content into coconut oil and than do the oil pulling with it.

    Feel free to reach out if you have any questions

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