Osteoradionecrosis of the jaw

  • 6 replies
  • 85 subscribers
  • 687 views

my mom was diagnosed with cancer of the tongue 8 years ago. She had a major op to remove half of her tongue and that was reconstructed with tissue/muscle from her arm and then skin graft from her stomach to replace what was taken from her arm. This reconstructed half of the tongue was stitched down which left her unable to eat and resulted in permanent speech impairment and swallowing difficulties. 

last year she had an oesophagus dilation to try and improve her swallowing but since then there has been a further decline in her health. Towards the end of last year she was told she has osteoradionecrosis of the jaw. She has had infection in her jaw twice in the last few months. The hospital gave her antibiotics course last week. Her skin is peeling on her chin and she’s in discomfort. Does anyone else know about this condition or have any experience of this?

The hospital have said mom can’t take the tablets because she can’t swallow, there is a surgery they can perform but have told us it’s one of the most riskiest ops ever. Person is not guaranteed to come out of the surgery alive which is why the doctors don’t want to perform this procedure unless they really have to. so atm its about management of the condition with long term antibiotics. 

  • Hi Pippa.

    I thought I'd pop on to at least let you know your post doesn't go unanswered

    You have a reply on your other thread. 

    I hope you get somewhere with the advice you have there

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I BLOGGED MY TREATMENT 

    Macmillan Support Line -  0808 808 00 00 7 days a week between 8am-8pm

    Community Champion badge
    1. Hiya further to my post, keen to hear if anyone else has ORN of the jaw? Has anybody had the jaw reconstruction surgery? If so any information will be very useful. I am scared for my mom and feel if I know more about it I will be more helpful to her and reassure her. as you feel helpless watching your loved one going through something awful. 
  • Hi Pippa. I don't know if  is around but he might pick up the tag

    Have a look at his latest post HERE

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I BLOGGED MY TREATMENT 

    Macmillan Support Line -  0808 808 00 00 7 days a week between 8am-8pm

    Community Champion badge
  • Hi Pippa. I had a free flap scapula in Oct for left mandible.  Unfortunately I had an infection and after 11 weeks it failed with the titanium plate becoming exposed. My surgeon discussed I had been unlucky as there is a high success rate of 90%. Come January I had a second free flap scapula with a smaller titanium plate and a skin paddle on my face to reconstruct damaged external tissue. It appears to be healing well and I am now at 14 weeks and active and have no pain. It feels different having a bulky structure in my mouth and there are plans for some dental rehabilitation.  It also seems surprising that I was in intensive care with a tracheostomy only 14 weeks ago. I found it a very tough procedure emotionally and physically given i hadvto have the procedure twice.The pain was manged well both times I was in hospital with morphine, oxycodiene and paracetamol. It's important to take meds for bowels as its common to get constipation. I was on a gastric nasal feeding tube for about 6 weeks after each procedure. I have some facial nerve damage with numbing of left ear, chin and lips. I know it sounds a lot but it's doable and success rates are high. It takes time and I am eating well and feeling well, other than issues with lymphoedema which I manage with lymphatic massage. I hope everything goes well and I would be happy to answer any specific questions you have which I may not have mentioned.  Cheers

    Shaun.

  • Thanks so much Shaun. 

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I BLOGGED MY TREATMENT 

    Macmillan Support Line -  0808 808 00 00 7 days a week between 8am-8pm

    Community Champion badge
  • Thanks Shaun your helps invaluable. We’re back in West Yorkshire seems like we brought the weather with us for now. 

    Hazel x

    Hazel aka RadioactiveRaz 

    My blog is www.radioactiveraz.wordpress.com  HPV 16+ tonsil cancer Now  6 years  post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help

    2 videos I’ve been involved with raising awareness of HNC and HPV cancers 

    https://www.instagram.com/merckhealthcare/reel/DBs8Y0niJ8N/