Hi, I had a mucoepidermoid carcinoma in my right parotid gland removed in December 2023, followed by 6 weeks of radiotherapy in March/April 2024 to zap the few bits that they couldn't remove surgically, I had 65.1Gy over 30 days.
My recovery was going really well until late 2024 when I started to get fatigue, and ear ache; this worsened over the months and after several CT and MRI scans. At first it was diagnosed as Chronic Mastoiditis by ENT, but after referral to Otology I was told that it was actually Osteoradionecronis of Temporal Bone, however as at the moment it wasn't serious enough for any intervention and should be managed with pain relief.
I was warned that radiotherapy could effect the bone structure of the jaw in some cases when it damages the blood supply causing areas to die off; but I wasn't aware the it could happen to other areas.
I have tried to find out information about this condition, but it seems hard to find, I now know that it's abbreviated to the acronym TBORN, but other than results of long term studies at a hospital in Texas, there don't seem to be any guidelines available for patients. The study I found said that minor cases should be managed with pain relief and careful washing of the effected ear. I am trying different painkillers at the moment with my GP to find the right combination, but I would still like to know a bit more about this condition, which appears to be an uncommon one.
Do MacMillan have any information that you could share with me please?
Kind Regards
NickyW
