osteoradionecrosis surgery.

Thanks Hazel. I have left Shaun22 a friend request. (I'm assuming that's how we make contact?), and will wait ti hear.

Hi bridgetb have sent a friend request. Navigating these pages are all new to me. I know the info' is there, it just takes time to track it all down. Does the friend request mean this becomes one to one or is it still accessible to all?

I'll wait to hear.

hi Friend   requests enable you  to have private conversations once request is accepted you use the rectangle  top right on the forum to pass  private messages. 

Hazel 

Yup. Got that now thanks.

Hi Steve. I had chemo/radiation in 2022 for left tonsil and 2 x lymph nodes. I was on the torpedo trial using proton therapy.  It was about 12 months after that osteoradionecrosis first started cause issues. It was difficult to diagnose but after 13 months of infections, antibiotic therapy and eventual pathological fracture with an oral cutaneous fistula its was confirmed as the latter stage of osteoradionecrosis.  It's a horrible condition and at this stage, radical mandibulectomy was suggested using my left scapula free flap.  Sometimes fibula is selected but in my case the scapula was used. This procedure too place on 1st Oct 2024. I had complications with infection which needed another surgery to remove puss from my neck and spent 3 weeks in hospital.  I was discharged with antibiotics and all seemed to be going well until the 13 week and a fistula developed exposing the plate and new jaw bone. This was devastating having gone through this first procedure.  Surgeon suggested another free flap scapula using my right one with a much bigger flap to reconstruct tissue on the outside of my jaw and neck. I am currently 3 weeks after this second operation and see surgeon for assessment of how things are going. I am hoping that this second procedure is successful.  It's tough going but there was not many treatment options for me. Can I ask what are they proposing for you ? And please feel free to ask me anything.

Cheers Shaun

Hi Shaun, Sorry for the delay, needed to do a bit of Googling before appearing too 'unmedical' in my discussions.

When you think you've come through the worst, to then have such a set-back after 3 months would be a total downer for anyone. Full admiration for getting on with it again.

My proposed op' is a 'fibular free flap'. Can't continue as I am. I'm supposed to have retired (63yrs). It was all going to be river cruises, weekends away, and midweek lunches. At the moment with a 1cm mouth opening my food options are limited and I dribble a lot of it!

So anything which in the long term would allow us to get on with some sort of normality is going to be considered. Anyone who reads this forum already knows nothing is cured overnight and we just get on with it.

Despite your unfortunate experience, would you say it's still woth a shot?

Hi Steve. The type of operations such as scapula or fibula free flaps are deemed to be the main procedures for osteoradionecrosis that has progressed to jaw fracture exposed bone and oral cutaneous fistula. I can sympathise with how it puts life on hold, it's so frustrating.  In my case I listened to the surgeon and placed my trust in him. There are good success rates for this type of surgery but from what I know people with osteoradionecrosis and poor vasculised bone and tissue set increased challenges for surgeons. Listen to what they say Steve,they know what they are doing. This is my second attempt and hopefully things go well. The problem with me is I think about what ifs and I need to keep of Dr Google. When is your operation Steve ?  I will keep you updated if you want ? And please let me know how your doing. 

Thanks Shaun

As I mentioned in my opening post. I had the CT scans on 25/1, but when I woke on Monday there appeared to have been a movement with my jaw, (which is no new event because the bone appears, grows through, breaks off and more appears, jagged enough to drag along my tongue and cut into the cheek). I've even had one brilliant young max-fax chap snap a particularly sharp piece off some years ago. If only it was that easy now!

So this is when I decided that it might be easier to go into this using the experience of others, before I get the follow up appointment.

Yes picking shards of jaw bone out of the gums very painful.  Let me know how you get on and best of luck Steve.

Cheers Shaun

Thanks and good luck yourself. You're one of the few with first hand experience.