Shell shocked

Keeping my fingers crossed for you.

Sending good wishes

Best of luck Shaun 

Hi Cazitta. Hope you are well ? We have had contact before regards my jaw issues. Initially thought it was cancer but it's turned out to be aggressive osteoradionecrosis of my lower mandible.  I am scheduled for a free flap fibula mandibular resection in October.  Just wanted to know how things are going and any advice regards what to expect with treatment and recovery time. Hope that's OK to as that and do hope your well. Cheers. Shaun

Hello Shaun, I'm glad it's not cancer but sorry to hear that it is aggressive. It's been 8 months since my mandibular resection and it feels so much better now and looks it too. However, I have scans next month to see if cancer has returned, so nervous about that and also another surgery as the gum, made from my neck flap, is still too swollen so will need to be cut, fat zapped out and restitched. Then if all goes well I will have 5 replacement teeth in a few months time. 

The surgery itself was brutal although it all went well. 8 days in hospital and 2 in ICU. It was very painful for a few weeks but had plenty of painkillers to ease it and cold compresses etc . I had pureed food for 3 weeks as could not open my mouth much. Very bruised and swollen but overall, it's all doable and it will all heal. I still have lymphoedema lumps on my neck which I hate but even that is much better and most days would don't notice it until I point it out. Any other questions please feel free to ask. Wishing you the very best as you go through this. X

Hi Cazzita 

Thank you so much for replying. It all sounds challenging and doable. I hope everything goes well for you regarding scan and future treatment.  I must say that I sm eager to have the surgery as I have ongoing chronic infections and a fistula which has popped up on my jaw. I am preparing for surgery by keeping fit jogging and walking. No boxing though lol. It's really good to hear from you and if ok I will contact you to share updates which will be helpful. All the best Shaun.

Yes Shaun , please do that. I'm happy to listen and to recount. Yes, it sounds like you need this surgery sooner rather than later. Wish you didn't have to wait so long. Yes, keep fit and well and keep some weight on you too as I'm still not allowed to lose any yet. So eat well and keep fit. Xx

Will do Cazzita thanks x

Hi again Shaun, just read up on what you have , so it was actually caused by the radiotherapy? How bloody unfair is that! I didn't have RT as they think they have all the cancer but aren't 100% sure but they didn't think I should go through it if I didn't need to. If it comes back I will have to. I'm so sorry this happened to you. X

Hi Cazzita. Yes my consultant says I've been unlucky to develop osteoradionecrosis. Having been through a lot already it is a huge disappointment and challenge. The jaw surgery is the same as jaw cancer but without radiotherapy. The osteoradionecrosis I have is progressive and destructive so I really have no choice but to have mandible resection as its constantly infected and has pathological fracture. I am just going to put my hands in the professionals and hunker down for round 2. Trying to keep positive and I have a good support network which is super important.  Will chat again thanks.

Shaun

So good you have support. Fingers crossed for you and that will be the last of it. X