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Well what can I tell you now about ORN , my poor husband has been in terrible pain this past week. He couldn't wait for Friday to come for his forth debridement for ORN on the lower right side of his jaw, he was also going to loose 2 more teeth.
Sadly the surgeon came to see him after the operation to drop the bombshell that his jaw was broken. So the operation was abandoned and the decision has been made for a bone graft. So we wait to hear when this will be. My husband is still in pain and his face is now swollen. He is also worried about 9 hours of surgery as this past year has left him 4st lighter. I cannot believe he has fought the beast and now he is left dealing with side effect of the treatment it seems so unfair ....
We had a phone call today and it's going to be done this Saturday. My husband has been treated by the same surgeon the whole way through this crap journey and we have every confidence in him.
He actually said that he would like the oncologist to see what damage RT does !! Guess that says it all...
People have said to us'thats awful but he is still here' and yes he is but he is a very broken man compared to the man he was. For me that is the hardest part of all. I just hope and pray that after this is when he finally starts to recover from this God awful journey. He really does deserve to start getting his life back.
I have ORN. I have just completed 6 months antibiotics and the infection has so far not come back (3 weeks) although my jaw is still swollen. I have just had results from PET scan, they do not knowhow deep it is but says the necrotic bone is a larger area than expected, he explained there are 2 walls to a bone and one wall is necrotic and the other partially. Dr says we will not see real problem until surgery and may need steel plate because I my get a pathological fracture. I did not ask many questions as I was in shock. He told me I could wait if it seems stable. He says its not progressing but how does he know? If it is not progressing I will not have surgery, why risk it? I have read horror stories. I had 40 HBO treatment but no help. Any advice for me ? Does it progress? I will not be seeing the Dr again as he cannot perform the op. I live in the Middle East. Are there any maxillofacial surgeons in Uk who speciaalise in ORN?
Well this has been the week from hell.
My husband had 11 hours of surgery for ORN and 8 days on is still in ICU. The good news is the bone graft appears to have worked although I'm frightened to tempt fate and say it's definitely solved the problem. I guess my glass is half empty !! However 11 hours of surgery on a man who weighs 8st also comes with its problems. They removed the trachy on Thursday and due to the gunk in his lungs from a long GA and the thick saliva from RT he chocked and went into cardiac arrest.... Bloody nightmare. They put the trachy back in and will try again in the next few days. They have run tests on his heart and there is no damage ,wish I could say the same about mine.
Last night he was running a temperature so obviously something else is going on. I just feel it is so unfair that RT as much as it's sorted out the cancer it's left such huge problems in its wake. We both never imagined we would be facing such huge challenges 18 months down the road. My poor husband is truly a broken man at the moment and I hope and pray that he finds the strength to get through this. Thank you for listening x
Hi Penny, my thoughts are with you and your husband and wishing him a good recovery from the operation. Its a very tough time you're going through and I hope you see that light at the end of the tunnel very soon. Hope your husband feels he can tackle the oxygen treatment as this will certainly aid healing and recovery. x
Littlerosie, to answer your question from before. and also it may answer your question Suefew. I was diagnosed as having ORN in January 2013 and had several weeks of antibiotics. My consultant wanted to take a back tooth out, but I wouldn't have this done without the HBOT. I ended up taking myself off for oxygen treatment at an MS therapy centre as the hospital did not refer me despite telling me they would. From this the ORN "settled" - I think this means that it has halted/is not active at the moments. But it could start up at any time. The funding for HBOT on the NHS has finally come through (some 16 months later!)although I still haven't got dates to actually start the dives. My hospital consultant now does not want to take the tooth out as he said it would make a bigger hole than if my tooth was left to fall out on its own. But he says that I should still have the HBOT as a preventative.
So Suefew, from my understanding it seems that ORN can spontaneously start and stop, but it seems that the risk that it will start (again) will always be there. If HBOT improves the state of the bone then that would presumably make the risk smaller.
Hope that helps.
I have exposed bone. A small point appeared 1 year ago while I was having HBOT. It has got larger after having another tooth out. From then it has been pain all the way and approx 8 months antibiotics. 5 weeks ago I stopped antibiotics and it has not flared up and seems to be settling, although it is tender to touch and still swollen compared to the other side of my face.My surgeon is ready to do surgery but says it's up to me when, now or in a few months.I am worried if i leave it it will get worse but if I have surgery i will be back in pain zone after finally having some respite.He will not know how deep the necrotic bone is until he opens it up. I am in a dilemma.
The usual/recommended HBOT here is now 20 (x 90 minute)sessions at 45 ft depth, then another 10 sessions after any extraction/surgery. The place where I am due to have mine told me that some people can need up to 80 sessions. Will you be able to have HBOT before your surgeon does anything? Hope all goes well for you.
I don't think there are any hard & fast rules and different consultants seem to have differing opinions. My own GP told me that ORN can spontaneously halt/settle down. I've also been told that ORN can spontaneously start although there are usually triggers the most obvious being trauma like tooth extractions, but also infection (hence the need for mouth hygiene and need to keep plaque down), periodontal disease and even cleaning (especially gum pocket/root cleaning). I have heard of people having intravenous antibiotics after mouth surgery/tooth extractions to help prevent ORN and I've heard of other people who have been put on oral antibiotics long term to stop/prevent infection.
Its a very frightening condition - best wishes, Hela
Hi littlerosie, I was diagnosed January 2013 - I went to my dentist because of severe pain and infection. I already had periodontal disease and receding gums and in the area of pain the gum had receded so that you can see the tops of the root. He took an ex-ray and saw than a lot of the bone had gone/receded. He also found what he thought was a little bit of bone in the recess (although I wondered whether it was a tiny piece of ground walnut that I had put on my breakfast that morning. He then referred me to the maxilofacial consultant at my nearest hospital. I don't know whether any of the bone was exposed at that time. When I saw a different consultant in December he said that I didn't have ORN because there was no bone exposed. But by that time things had 'settled' anyway and I had had several sessions of HBOT at a MS therapy centre as the HBOT promised by the hospital never happened (although after all this time seems to be going through now).
It's all been confusing and a mess! What I have learned I have found out piecemeal and mostly by having researched and asked questions myself. Very little information has actually been offered and one hospital dentist point blank refused to talk to me about the risks of ORN.
It is so confusing. I have exposed bone and a PET scan last week has shown 2 areas of necrotic bone. For the last 6 weeks I had been feeling better and off antibiotics so i was shocked to see it had got worse,before it was only a marginal area of necrotic bone - the bit exposed. my surgeon still recommends taking away the dead bone and sealing it up but I am worried it will cause more trauma to the bone and the ORN will get worse. On the other hand I am afraid to leave it in case it gets worse. Any experience of this position?
Suefew, I have met a man who has had a couple of operations to take away necrotic bone at the top of his jaw to the healthy bone. Since then he had 15 consecutive days HBOT and then he has been having oxygen therapy once a week now for about 18 months and his consultant is now a great believer in it as he says that the bone is much healthier and has not deteriorated further. I think taking away necrotic bone is fairly standard, but given that there may be some trauma to the healthy bone as the necrotic is taken away, then oxygen helps prevent any further necrosis. We need someone with more knowledge to answer your question about whether if you leave it will it get worse, I can only say that my GP told me that necrosis can spontaneously stop. But we seem to be told such different things....
Is there any way you can get any oxygen treatment?

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