Osteoradionecrosis

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Just a quick update and will have to break things down as a lot has happened.  Due to osteoradionecrosis, pathological fracture  fistula, caused by radiation damage I had a free flap scapula reconstruction in Oct 2024. The treatment was very tough and infection complications throughout requiring additional surgery. 

3 weeks in hospital and got up to 13 weeks recovery and all going well however. Serious delay healing until alarmingly titanium plate came through my face and was fully exposed with neck tissue damage. This was devastating as up to 11 weeks things appeared to be going OK. Had another operation to determine extent of damage and bone, flap had failed. 

This takes me to last Tuesday,s operation another free flap scapula reconstruction using my right side. I also have a skin paddle to graft onto the tissue defects on my jaw line. This time no infection, 3 days in intensive care and 4 days on the ward. Now discharged home on NG Tube and next outpatients next thurs. To say the recent surgeries I have had as been a challenge is an underestimation  I feel like my body and mind has been through the mill. Started talking more to people and plan to see psychology soon. I thought I would just update and wander if others out there who have had failed surgeries due to osteoradionecrosis radiation damage. I had hoped that the proton therapy I had for tonsil and lymph node cancer would have reduced the risk of osteoradionecrosis but was told I have been unlucky in addition to the recent failed scapula free flap surgery.  This second time I hope it has worked but time will tell. Replies, questions welcome please.

Thanks Shaun

  • Hi Shaun. That sounds awful, I am so sorry to hear about the osteoradionecrosis. I have not had a similar experience but just wanted to let you know that I really feel for you. I do hope that the new free flap surgery goes well and that you can start to put this behind you. Talking to a psychologist sounds like a good idea I'm sure it will help you get your head around your recent challenging experience.

    Sending you really positive thoughts and my very best wishes for a good outcome.

    Lyn

    Sophie66

  • Thanks Lyn. Hoping this time round this second surgery works. Cheers

  • HinShaun sorry I missed your post yesterday. Oh no I was wondering a few weeks ago how you were getting on. On today posts there’s a guy asking about osteoradiodencrosis I’ll tag yiu on his post if that’s ok. 

    fingers x for this time 

    hugs Hazel xxx

    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/

  • Hi Hazel

    Yes it's a very traumatic time with 2 x scapula free flap surgeries plus 2 explorative surgeries within the last 16 weeks or so. I am hoping this time around it's successful. I was so upset that the 1st one failed after 12 weeks. I don't mind been tagged into the guys post.

    Thanks 

    Shaun x

  • Hi Shaun. Thanks   Everything x for you hoping no more issues  MacMillan do 6 free counselling sessions in conjunction with Bupa might be worth giving them a call on Monday. Sending hugs 

    www.macmillan.org.uk/.../macmillan-support-line

    Hazel xx

    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/

  • Hi Shaun

    so very sorry to hear about your awful journey with ORN and about all the challenges you've been through with the surgeries and complications. So emotionally and physically exhausting.  I truly hope this second reconstruction proves successful and you can be pain free and back riding your bike again.  I’m glad you're reaching out for support. Sending you strength and gentle healing wishes for your recovery ahead.

  • Hi Poppy. Thanks for your well wishes. I am post 5 weeks operation.  I have some worries about the skin paddle graft at the moment which appears to be lifting up in places.  I just hope it holds out. LGI have been good as I can contact with any concerns.  It's just an anxious time due to the initial construction failing. They have a plan C but hopefully not go down that route. Surgeon told me I had something bad  I.e the cancer then ended up with something just as worse advanced osteoradionecrosis.  I have a review in a couple of week and hoping NG tube comes out and I can enjoy a coffee.  Been craving it for months. It's the little things in life we enjoy and take for granted until you can't have them. Determined to get back on the bike but may take time. All the best and thanks again for kind comments. 

  • Oh God Shaun, that all sounds horrendous, no wonder you feel like you have been through the mill, you have.

    So sorry you are going through all of this and hope that you recover well. Thinking of you. XX

  • Thanks Cazzita, your right it is tough going . I will get an update in 2 weeks when the Surgeon has an assessment of things. There doing what they can and I know I am in good hands to deal with any complications. Hope your well and thanks for the kind thoughts. X

  • Hi Shaun. Fingers x that this  time everything works out and you’re back on bike soon 

    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/