I have had this problem with an infection that initially started out as a tooth infection which spread into my jaw and has caused a lot of discomfort and problems with eating.

Having put up with the usual shunts between the GP, the dentist, and the hospital.....and getting nowhere for three months, I wrote a four page letter to Wexham Park Hospital outlining the problem in detail, together with photos of the messy oozing wound on my jaw which no amount of anti-biotics has cleared (6 courses). This prompted some action from a facial surgeon who phoned me on reciept of the letter and got me in to see him within days.

Tuesday 30th june, I had some x-rays and was finally given a diagnosis for my condition. It turns out that I have "Osteoradionecrosis" ......deterioration of the jaw bone from infection. This happened because the Radiotherapy I had in 2003 for Cancer has weakened the jaw bone on my right side and a minor trauma such as tooth infection, Absys, or small injury can trigger infection of the bone and it will start to disintegrate....like mine is doing now.

To stop this condition getting worse I will have to undergo surgery (10 hours) to have a piece of bone cut from my leg and grafted into my jaw when the infected section has been removed. I have to go for an MRI sacn and a CAT scan over the coming weeks to determine just how serious it is and wether there are any cancerous cells in there somewhere (you never know). I am scheduled for surgery on 22nd July at Northwick Park Hospital, Harrow (though yet to be confirmed) and will be in hospital for 10-12 days following surgery. I will be on a liquid diet for weeks ( a tube through the nose for the first week) and will have to have physiotherapy on the leg where the bone graft has been extracted from and my jaw will take some time to heal and get get the muscles working again properly to enable me to eat, though I may have to put up with some limited movement (I have restricted movement already from Cancer treatment so I hope it doesn't get too more restrictive than it already is). Guess I won't be talking much for a little while.

Wish me luck as I really didn't expect all this but it has to be done ( or the bottom of my face will fall off ...Lol ) ...joking there, but it is serious and if left it would cause big problems in the future. There may be a re-occurence sometime, even after surgery, as the radiotherapy has given me life long side effects that could always create a knock on effect, but this is one problem that surgery should clear up ok.

I'm going to be a bit fragile and probably not very active or sociable over the coming months. I have been signed off for three months initially so summer work plans have gone out of the window and i'll just have to sit out the recovery period and find things to do to keep myself occupied that won't stress me out too much.. I'm guessing at a few odd jobs around the house as and when and i'll get some fishing in as well (if the Weather stays decent).

When I weigh everything up i'm thinking in all fairness that i'm well prepared for this as I have suffered much worse. The problems that my heavy Radiotherapy caused me with burns, pain, and depression as well as feeding through a stomaach peg for eight months back in 2003 surely has to be the worst amount of pain and discomfort that I will ever have to go through. I guess that this latest problem is a stark reminder that the Cancer stays with us in perhaps less destructive forms and can come back to haunt us in the guise of a side effect of the treatment.
I'm ok with it and still smiling (well for now anyway). We are a hardy bunch on MCF and i'll see this through albiet i'll have more battle scars to show for it.

I'll try and keep you posted but for now.....that's all folks!

Steve

My battle wth Cancer is on my website

Stephen Lee Ostrowski Author / Musician
http://stevieo.webs.com/

Hello Steve

Soory to hear of this setback. Did your surgeon discuss/suggest hyperbaric oxygen or pentoxifylline?

Do keep us regularly posted.

Best wishes

Vinod

HI there Steve
You are right ~ once cancer enters your life, it's there to stay. It's a bit like the little paper clip icon that comes knocking on your computer screen to alert you to something or another. No matter how comfortable we get, way back in the dark recesses, we expect a tap on the shoulder! Little *%&$#@
You sound very positive and upbeat. I hope you're able to maintain that approach although it's only natural to stress over each new 'event'.
Keep us all posted. You know everyone is here for you to offer support and friendship.
Keep smiling.
Love
Deborah

Hi Deborah. Thanks for your words of support. The build up is probably the worst. I just want to get it over and done with and back to "normal" (whatever that it) as soon as possible. Plans to make....places to be and all that.

Vinod....I did discuss hyperbaric oxygen treatment for this with the consultant but he was a little sceptical about the overall long term benefit of this and after looking at the x-rays, felt that surgery was the best long term solution. I'm on eight 150mg Clindamycin a day which should improve the current state of things until such time that I go under the knife. Pentoxifylline i'm not familiar with and this wasn't bought up but i'll look it up anyway. Guess i'll go with the flow though and opt for the nice new piece of jawbone if that will see me through this life.

I'll keep you all posted. Anything I have to go through with regards to this may prove useful to others one day.

Steve

Hi Steve,

I wish you all the very best. Your mail scares me and at the same time gives me hope.

I had radiotherapy last year and the side effects so far are much worse than I was expecting but it's always better than the alternative.

Currently in the process of pain management with the doctors. Had to make up a medicines sheet again to track what I am taking everyday. Next check up is on the 16th July.

Please keep us updated.

Take care

Ken

Hello Steve so sorry to hear about this set back "Osteoradionecrosis" ,there is this word again.Don't know if you have read our posts but my hubby started having problems from last xmas with what appeared to be nerve pain in face and back of neck eventually through more scans ,MRI and Pet ,they have found out he has this at base of skull but unfortunately they cannot operate to resolve this .I know you have major surgery ahead and life will be very difficult for a while but be strong and positive in the fact yours can be operated on and a solution is there.

My hubby unfortunately has recurrence in same area underneath original site even though he had a second treatment of IMRT last year and I asked if this what had caused the "Osteoradionecrosis" ,they said no and indicated it woud be from first time round .

Like you Paul had constant infections and always on antibiotics, so many different ones I can't even remember them all, the hyberbaric oxygen was also not thought to be of any help with him.As far as I am aware surgery is the best option where possible .

keep us up to date as this is a condition which will come again. I feel the symptoms present and are ignored for too long as they are explained away by other expected side effects .

Wishing you well for your operation and hope you keep your strength and positive mind set in mint condition.

Bell.

Hi Steve, that's really crap news. I had RT in early '98 and a lot my mouth problems are from that and not the operations. I hope it all gets sorted. Hagg.

Hi Steve,So sorry to hear the bad news I was shocked to hear it.
I really do not know what to say but good luck and keep us posted.

Paul

Thanks for all of your messages of support and i'm in a fairly bouyant mood with it all. What will be will be. I have spoken to a few people who have had a close relative or friend that has undergone this type of surgery for
Ostoeradionecrosis and the feedback has been fairly good.
Already though things are not quite going to plan. Surgery was scheduled for 22nd July but one of my scans (MRI) was booked for 13th July and the CT scan was booked for 27th July ....even though they were requested for the earlier date. This is to be done in Heatherwood hospital in Ascot which is bloody miles away. Now I have managed to get them both put together on the 21st July but that will be too late for the original surgery date...sigh!.
Seems likely now that my operation will be sometime in August, but that depends on the surgeon's diary and he is on vacation shortly i'm told. No point in getting mad about it but I would like a date ASAP.
The biggest discomfort with all of this is eating....trying to force the food into the widest gap I can make in my mouth and then the associated pain with trying to chew, so it's mainly mashed or spaghetti type dishes again like the good old days when I first went back on solids after recovering from RT and the peg came out.
When it all eventually gets done and dusted i'm gonna go back to Thailand for a few months and just take my time getting back on track again and enjoy some serious chill out time. Won't let it drag me down.
Any way........best of luck to everybody and what they are personally going through here on this forum. It's nice that we are all behind each other during difficult times.
Update when the powers that be let me know what's happening.

Bye for now

Steve

Arrrrggggghhhhh! How frustrating. What can you do but go with the flow, eh Steve.
Keep us posted and keep on keepin' on.
Cheers
Deborah

Hi Steve, I haven't been on the site for awhile so I'm just reading about your setback now. I'm so sorry to hear about all of this. I just completed my first full year cancer free (yesterday) and am always worried about what side effects are still to come. As of today's date I still can't eat solid foods and am relying on my tummy tube 24/7. it's the pits, but the alternative is worse.

Good luck to you!!!! Keep your spirits high!!! Cricket

Hi Vinod and everyone else. I have returned from Thailand and had my operation which i'll come back to in a minute.

I spent most of time in Bangkok and Pattaya on this recent trip though I travelled more extensively around Thailand prior to this and spent time up North I Udonthani (where I met my lady love) and Nong Bualamphu. I am currently looking at buying a condo in Pattaya.

I have had the op for my Osteoradionecrosis condition. The surgeon explained that when he cut me open he found that my jaw was not as extensively damaged as first thought. The dead bone and infection was cleared up and I was stiched up again to fight another day. He did however, tell me that the condition would slowly deteriorate over the coming years and it's highly likely that I will need the full bone graft at some point. So....on this occasion I only had to endure a short stay of three days in hospital as opposed to the 14 days I had planned for.

Cancer never really leaves you and the knock on effects continue to feature in your life even when in remmision. Still......I think I have a postive mental attitude towards it all now and this was certainly nowhere near as bad as all the radiotherapy That I had to endure back in 2003. That really was tough.

I get the feeling that most of my future postings will be coming from a PC in Thailand in the future. I will spend as much time there as possible if things work out with a suitable apartment purchase.

I hope everyone is coping well with their own personal issues and that you keep strong in body and in mind. Bless you all.

Cricket.....nobody sympathises with you more than I do. I hope things gradually improve for you.....I really do. I had to virtually learn to eat again as it had become alien to me. Keep us informed of your progress and good luck.

Steve

Hi Steve - sorry to hear the trials you are enduring.

This Christmas will be the first in about 12 yrs that we haven' been to Thailand.

Whereabouts in Pattaya are you looking at a condo ? We have stayed at the Lek Villa, on the Naklua Rd for the past 3 yrs - and various other places before that !!

ENJOY