ORN sufferer awaiting jaw replacement surgery.

Where are you Brad and what have you tried for  the condition? 

I've asked because there have been immense breakthroughs recently in medical treatment of even the most hopeless looking cases.

Hi, 

thanks for your messages. I live in a small village in Dumfries and Galloway and receive my treatments in either Dumfries or Glasgow, but it is Glasgow QE hospital where my surgery will take place. 

I fully appreciate that new treatments are available and with the exception of decompression therapy, the team looking after me have tried them, without success. This includes the combination of Pentoxyfylline, Sodium Clodronate and Liqua-E. However, although these drugs have slowed the progression of the ORN my jawbone has fractured and is only held together with scar tissue. 

Thanks, Brad for letting us know. It seems surgery is the only recourse now. I'll tag a fellow Champ chris2012 as he has had extensive jaw surgery though not for ORN. Osteoradionecrosis is rare and there are few reports here. I was going to suggest a referral to a particular oncologist but he is based at Guy's.

Some of the results of surgery have been spectacular so maybe hold that thought. Best wishes and I'm sorry I can't be of much help

Good evening Brad, i myself have had two-thirds of my lower jaw replaced, and the recovery and disfiguring is definitely worth going through the operation for. It is a log operation, but one minute you are asleep in the theatre and the next you are awake with the operation all done in the recovery ward so it is nothing to worry about in that sense. Recovery does take quite a while so work will not be an option for a few months. Maybe when the operation is being done they might look to see if they can look into the nerve damage at the same time. I also had the tingling and numbness in the jaw and lip area but that gradually disappeared once the healing had taken place, maybe about 6 months to a year. My go-to pain killer is a liquid one called Short-tec and is very good being a controlled drug, i found the liquid easier to swallow or put through my PEG if needed. 

     I would phone up to see what progress has been made for your surgery as sometimes they need a nudge in the right direction as sometimes you can get lost in the system. I know it all sounds a bit frightening at the moment but just take things a day at a time as it helped me cope better. Please re-post if you need further help, all the best, take care.

                                                                           Chris 

Hi Chris, many thanks for taking the time to share your experience with me. It is very reassuring that some normality awaits following the procedure. I just want to get it done now. I’m done with waiting. I took your advice and made a nuisance of myself with my surgeon. However, due to bed shortages my wait goes on! 

Can I ask, was the bone used for your replacement surgery taken from your leg? If so I am interested to know how this has affected you, as I am a keen Walker regularly walking over 6 miles every day. 
Any more advice would be most welcome, 

Thanks, 

Ronnie. 

Good luck with the bed situation Ronnie, yes the bone was taken from my leg, I have recovered very well and I manage to walk around all day after 12 years I do get a bit of pain, funny enough it's when I relaxing. Just get it in your mindset that its going to be quite a long recovery and you will have good and bad days but the main thing is not to suffer any pain and just let your body do the talking. You will be closely checked by your team who you will find are brilliant at their jobs. Take care.

                                                            Chris