Hi All,
I wanted to reach out and ask if anyone had experience of osteoradionecrosis of the temporal bone (commonly referred to as TBORN)?
I finished my radiotherapy in April 2024 (Mucoepidermoid Carcinoma of Parotid Gland, surgery followed by 30 radiotherapy sessions); in Oct/Nov last year my fatigue started to get worse and I began to get earache and ear pain, on my right side where the cancer was. CT and MRI scans revealed his to be TBORN.
There isn't vast amount of information available out there, I have found a few university studies on the subject, but they concentrate on the statistics rather than coping with it.
My TBORN is minor and at the moment it's a case of managing the symptoms rather than any surgical intervention, but it has appeared after only 12-14 months post radiotherapy, which is a rather short length of time, from the research data I have read, most people don't experience it until years later.
It would be reassuring to know if anyone else has experience of this unfortunate side effect of radiotherapy treatment, in the temporal bone?
Kind Regards
Nickyw.
Hi NickyW
I can help personally but there are members here dealing with ORN so somebody might pick up.
It might be worth asking if your consultant can put you on PENTO or PENTO/CLO
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
Hi Dani,
Thanks for that, I'm seeing the consultant again next week, so I'll ask him about that as a treatment.
Thanks for the link to your blog, what a great idea it was to do that
Nicky.
Thanks for that, I'm seeing the consultant again next week, so I'll ask him about that
Keep us in the loop.
The blog was something I could control. It kept me sane. Thanks for looking at it.
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
