osteoradionecrosis surgery.

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Hi everyone. I have been a member for many years, but now for the first ttime seek particular help.

My osteoradioecrosis started in 2019 and has now reached the stage where my jaw is broken, (with a 1cm gap between my teeth). Without pain relief, there are 3 sections of the right side of my face in regular pain. The latest bone breakthrough makes it feel as if I have someone else's teeth in my mouth. And the constant dragging along my tongue and inside my mouth is a source of ongonig discomfort. Although I take Doxycycline 100mg to prevent recurrences, I am currently awaiting new script for Co-moxiclav 625mg to deal with this latest infection. This happened when I woke up on Monday, ironically, just 2 days after having CT scans of my Face/jaw and thigh for a potential bone graft.

I have really struggled to find any pre/post surgery reports concerning this operation. I know it's a biggie from conversations with the max-fax team over the years.But I need information to make an informed decision about how to proceed with my life.

Brief background: Have a wonderful supportive wife who's been with me through Radical radiotherapy right tonsil, 2013. Chemoradiotherapy to larynx and bilateral neck  in 2016. (21 + 35) radiation treatments in basically the same area. But she can't go on like this, she's nearly 70 and has her own health issues.

I would be delighted to hear from anyone who may have had direct experience of the procedure involved, (pros and cons), or just knows more about it than I do.

  • Hi Steve

    I would be delighted to hear from anyone who may have had direct experience of the procedure involved, (pros and cons), or just knows more about it than I do.

    I hope somebody who has had this done pops on with some advice. I’ll ask in a couple of other groups I’m in. 
    Can I ask whether this is your mandible or maxilla? 

    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

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  • HinSteve I’m tagging a guy who is going through treatment for oesteoradiosencrosis after proton beam therapy you might ask him a few questions 

      

    Shaun has also,posted on the forum today  

    Hazel 

    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/

  • Sorry, I wasn't expecting such a quick response. It's my right lower jaw at the back. (Mandible).

  • We’re pretty sharp here. I’ll ask around. 

    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
  • I would be delighted to hear from anyone who may have had direct experience of the procedure involved, (pros and cons), or just knows more about it than I do.

    I’ve asked in the Mouth Cancer Foundation FB group. 
    Have a look at their website. It will tell you how to join. I’ve found a lady who is awaiting the same op. You might be able to compare notes. More people will reply I’m sure 

    https://www.mouthcancerfoundation.org/

    theres a drop down menu with a FB icon you can click to join  

    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 Steve , can you send me a friend request as would like to speak to you about this if thats ok. My hubby had surgery in May 2023 and is worried about this condition.

    Hope thats ok . Best wishes Bridget x

  • My hubby had surgery in May 2023 and is worried about this condition.

    Hi bridget. How is your husband? Has he got symptoms of ORN?

    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 Dani , hes had mandibular and they reconstructed one side of the jaw and removed teeth. He has seen a specialist at the hospital who has made a plate with a few teeth for the good side which has teeth so he has a complete bite on that side. The consultant mentioned if he gets radioenocrosis this would cause him trouble. Hes worried sick and is over thinking this. Doctor google is not great and i think as hes partner i would like to understand everything before it could happen. I so feel for all you guys that have been through these traumas and as loved ones i would like to get as much information about these things so i can be prepared should i need to be. Fingers crossed im just 10 miles in front but i read everything. Wishing you all the best xxx

  • ORN is due to progressive fibrosis of the blood vessels that supply the jaw bone. It’s rare in the first year which is why if you’re going to have any teeth out it’s best done early. 
    He is overthinking it. There really aren’t any warning signs beforehand so the best thing to do is to make sure his oral hygiene is top notch and to report any of the following

    New and sudden pain or swelling in the jaw,  difficulty in opening the mouth. New sores or ulcers in the mouth, jaw, or gums.  Exposed bone in the mouth . Bone that sticks out through the skin. Numbness, tingling or infection in the jaw or mouth.

     

    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
  • I would be delighted to hear from anyone

    I've had a few replies to my query on the mouth Cancer Foundation. Join us?

    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