Has anyone suffered this side effect ? My husband has just undergone surgery for this problem.
Part of lower right mandible damaged,so the necrosis cleaned away and a fan flap from his cheek used to cover the exposed bone. His surgeon said there is a 70 per cent chance it will work or he will need a bone graft. He has so far lost 35lbs in weight and every day is a struggle at the moment.when this journey began last Oct nobody mentioned the downside of radiotherapy apart from how ill it makes you while you are having it,which he got through. It's all the late side effects that catch you out!!
Original Post
Yes, Penny, totally agree with you. It does seem that many patients are not told about the risk of osteoradionecrosis (ORN). I had 7 weeks of radiotherapy in 2008 (for an unknown primary - so I was blasted both sides of my head & neck). I already had periodontal disease and had lost a couple of teeth to that before the treatment, so I was very high risk for getting ORN - yet I still wasn't warned. Last year I was diagnosed with early stage ORN. I feel quite angry that I wasn't warned (I was given a form with several possible side effects to sign, but ORN was not listed. Although I was told how important it is to keep to a strict dental hygiene routine, I understood it to be because I was more at risk of loosing my teeth through periodontal disease rather than to try to prevent ORN - very different outcomes!
Hyperbaric oxygen therapy may be something for you to look into for your husband. I know many people say that there is insufficient evidence for it, but many do believe in it and use it.
Good luck
x
hi,Hela, i would be interested to know how you got diagnosed with early stage ORN.I have got probs with my teeth and waiting to have one out and am worried about ORN.I was never told about it either before or after RT,what symtoms do you get with it.Thanks
I have looked into HT and have discussed it with my husbands consultant.He said there isn't enough evidence to say whether it be of any help and that it does come with its own side effects. We would have to pay for it and the only place local to us is in Guildford through the MS society as its also beneficial to MS sufferers.
Since his first bout of ORN last June he has now lost a total of 56lbs and had another episode in early Dec requiring further surgery or debridement which is the correct term. The chances of a bone graft are now 50/50.
In answer to your question Hela, my husbands symptoms were splinters of dead bone breaking through like coral and rubbing against his tongue causing ulcers.
On a positive note he is 1 year post RT and apart from ORN and weight loss everything else is settling down. Taste is back,some saliva,managing to eat more and once again enjoy food BUT he has to choose sensibly or it can be a disaster. We feel that slowly we are reclaiming our life and for him the fatigue is less which is a huge positive.
As we have just passed the year marker we have begun to reflect and we now wonder how the hell we got through it. It is certainly not something you can ever prepare yourself for !
My teeth have been a continual prob ever since RT,My dentist has tried his best to save them,fillings after fillings.They just keep breaking and i cant eat anything hard at all.I Now have one that has broke off and i only have the back of it left,thats got to come out.im going to see a dental restoration surgeon on feb 25th.I will let you know what he says can be done.I Feel very embarresed about my teeth and wish something could be done.i cant have part dentures becouse my gums on my bottom jaw are all lumps and bumps from the surgery and RT.dentures cant fit on my gums.
Sorry I haven't been back on the forum for a while. To answer some questions I was diagnosed with ORN following tooth infection and severe pain. I have gum disease and receding gums and I think the infection got in due to that. But the bone has obviously been severely compromised by the radiotherapy. I was on anti-biotics for several months. I started having oxygen treatment with an MS therapy centre and things have settled down. My consultant wanted to take the tooth out, but another consultant said it would be more risk to remove the tooth as trauma to bone can start of osteoradionecrosis.
I live in Wales and the Welsh health boards will may for oxygen in special circumstances. I have waited over a year for this to be organised and still not started it.

NHS England has recently produced a document about oxygen treatment for osteoradionecrosis it states the in Europe oxygen is strongly recommended, but England states that there is not enough evidence. Interestingly pharmaceutical companies were represented on the board who wrote the report! hyperbaric oxygen treatment does not give profit to the big pharmaceutical companies and would very likely to be a much cheaper option for the NHS than expensive drugs, invasive surgery etc.
Although things have settled down ORN is a constant worry as it could flare up again at any time.
Glad that your husbands is doing ok now Penny. x
I was not told about the risk of ORN either Valerie. In fact I have not heard of anyone who was. It seems so odd that patients are required, prior to RT, to sign a consent form with a list of side effects noted, including the less debilitating short term ones like nausea, yet very serious side effects like ORN are not even mentioned. It's almost as if there is a 'conspiracy of silence'. To my mind, if patients are not told about this side effect they cannot have given informed consent. Just my view and difficult when I'm just happy to be alive. Apparently the survival rate for my type of cancer (unknown primary) is 35% - 50% beyond 5 years. I am now 5 & half years since RT.
What region of the country do you live Valerie? - there may be a MS therapy centre near you where you could access oxygen treatment. Many consultants would not do extractions without the patient having oxygen treatment 1st (20 before/10 after extraction). Good luck and let us know how you get on.
x
There are so many mixed opinions and levels of knowledge & understanding about ORN. It was my own dentist who told me about it, not anyone at the hospital. To push the blame on you, littlerosie, by saying you don't clean your teeth is appalling - radiotherapy causes this. I have been looking into the issue of consent & informed consent and I believe that hospitals are acting illegally by not informing patients of the risk of ORN. The greater dose of radiotherapy the greater the risk (especially over 40 greys - I have 70 greys).And I've been told that the risk never goes away.
I read that you had hyperbaric oxygen treatment when you had teeth out previously, I know someone who has been having it once a week for about 3 years just to keep it at bay - and his consultant is now a firm believer in oxygen.
hi all,sorry about delay in any replies, im still abit mixed up and have put my news about what happened with the restorative dentist else where on foram.Hela i live in Devon and think there is a MS in Plymouth.I agree with you how can people make a imformed concent when they are not given the full facts .It should be our choice good or bad. Someone i met after my RT,Refused point blank to have RT, he said the side affects were not worth the small increase in his survival rate if he had it.No one told him about the side effects he found out his self.10 yrs later he,s still here.Maybe they think they need to make the decision for us?Strange really i went to have my ear syringed and she said she had to tell me what could happen,yet have RT and something has serious as ORN and we are kept in the dark.Little rosie you should have complained when he said you did,nt clean your teeth,I bet you felt like knocking a couple of his out. hope all goes well for you with the restorative dentist.I will let you know whether i am suitable for implants as soon as they let me know.Idont know how much RT I had but like Hela i had it all over my neck,both sides and middle.takecare
I'm still getting used to the site and I only found out that you can have notifications sent to your email when someone posts to the topic.
Most people I know who have had ORN have gone to a MS therapy centre - they charge around £12 (Hereford - where I went) to £15/£20 a dive. Its getting harder to get it on NHS for ORN in England - Shropshire Health Board have definitely stopped funding for it and you have to go through all sorts of appeals & it takes ages. Wales is a little better but the application for funding takes ages - meanwhile the condition could be getting worse. I've met a few people who refused RT & chemo and have had oxygen therapy and done other things like change their diet etc. I think with the oxygen people have it every day for 3 or 4 weeks then try to go once a week.
There's a map here showing all the MS therapy centres in UK http://www.msntc.org.uk/centresearch.php - maybe there's one not too far from you littlerosie.

When they say that you may get dental problems in the future no one would think that this meant that your jaw bone starts dying! Dental problems to most people would mean having to have false teeth at the worst. If I'd have known about ORN I would have opted to have all my teeth out prior to the RT (or in hindsight probably wouldn't have had the RT.
Take care
Lincoln & Rotherham have centres and they are under 50 miles from Hull. I agree it is very is hard when you have to do it all yourself. I feel very let down by my hospital - the consultant put me forward for HBOT on NHS in January 2013, but someone in the hospital failed to make the application. At that time the local health board were paying for patients to attend the MS therapy centres to have HBOT. By the time the hospitals failure to apply was noted and another application was made it was after April and the policy had changed - HBOT was finally approved for me but I had to go to either Cardiff or the Wirral - both almost 90 miles away. I also have ME so there was no way I could drive myself there for one trip let alone 5 days a week for 4 weeks. So I went myself to Hereford MS Centre which is half the distance and I'm sure it was that that helped the ORN to settle down. They are lovely there and there are people going with all sorts of condition not just MS including ORN & cancer. I have just heard that I have an appointment at the Wirral at the end of this month for a consultation re HBOT - that 1 year and 3 months after the consultant asked for it for me. If I hadn't taken it upon myself to get some HBOT I don't know how I'd be now.
Good luck
Hi Littlerosie
I think funding for HBOT very much depends on where you live/what health authority you're under and what consultant you have. I would be very interested in any research about this as it seems to be a postcode lottery. It would be very useful to have a list of consultants who do believe in HBOT. Certainly, everyone I have met so far has had to get pay for their own HBOT at an MS therapy centre.
I haven't got MS, but the MS therapy centres seem to be the only provision of HBOT apart from the private hospitals.
In Wales HBOT can be funded to prevent ORN if extractions/surgery is needed and also to treat ORN if its already started. Actually getting the funding seems to be very difficult though and is dependent on a consultant recommending it - some consultants don't believe in it so will not recommend.
I probably wont have the extractions - one consultant recommended extractions another said there was more risk having the surgery than letting the teeth fall out themselves and having antibiotics if there is infection.
All the best
The dreaded ORN, well for my husband it has once again reared it's ugly head.14months post RT and the 4th time it has appeared. So far 3 lots of surgery and the loss of 2 molars. Surgery again next Friday with the loss of 2 pre molars, so now no biting surface. At the moment he is in considerable pain and unable to eat. We was not warned that this may happen although we was warned about everything else. It's been a nightmare and if it comes back a 5th time it will mean a bone graft which is a 9 hour operation and 2 weeks in hospital.... And on it goes the gift of life that comes with a huge penalty clause!
My husband has is very down and who can blame him
I've suggested the hybaric chambers but he is claustrophobic so it was met with resounding no.
As much as a bone graft is daunting it would mean he could have some implants. I think at the moment we are just overwhelmed with the constant side effects from RT.
So sorry how things are going for your husband. I am gradually speaking to more & more people about RT & ORN and not one person has been told about this side effect. And I am getting to feel quite angry about it. It is an enormous penalty clause and had we been fully informed not only of the existence of ORN but its implications as well, we may have been able to go for other options - for example having all teeth out prior to RT (which seems to be fairly standard at some hospitals) or have the oxygen treatment alongside or immediately after RT. But we were not given that option.
I have read on one HBOT providers site that for very nervous people they are introduced slowly to the chamber and can give 'calming' medication if necessary (I think this was one of the Spire Hospital sites). It does seem to be the only thing that can halt/stop the progress of ORN. Even at an MS therapy centre they may well be able to let your husband get used to the chamber at a quiet time, just to sit in there with the door open to get used to it may help. It is well worth getting more information on how the claustrophobia can be helped. There will be a Ms therapy centre in Surrey http://www.msntc.org.uk/centresearch.php
it might be worth contacting them and I'm sure they will have experienced clients with claustrophobia before.
Thinking of you both, x
Hi,friends,little rosie,thankyou for the advice about trendal and vitamin E.Im not sure when my treatment going to start if im given the ok.I Was told i will have go in ox chamber,i will be having all my teeth out then implants,its scary really the worry of gettin ORN,its a lot of teeth to come out and with each one the risk of ORN.I Had 15HRS surgery when i had OP, that was enough.Hela like you i would have prob had my teeth out at time of OP If i had been told about ORN .thankyou for all imfo about the cost of dives and the availability of ox therepy.I think something needs to bedone about the situation,we did,nt neglect our teeth the RT Rots them, we should get the ox treatment as and when we need it,in the same way as any other treatment we needed due to the cancer.We should,nt have to wait months and months either.Also the Head and neck patients should be told about RT and ORN before RT.Some one needs to address this issue also.
You're welcome littlerosie. Yes unfortunately we don't seem to be able to rely on the NHS and have to arm ourselves with information. I'm so glad I found this forum as I feel so alone at times. Somehow the hospitals makes you think that you are the only one it is happening to and there is no-one else to talk to in the same situation. This type of forum brings people together despite the miles between us. It is a great source of support and great that we can help & support each other. x
I had a pre HBOT consultation yesterday at the Spire Hospital in the Wirral and am to have 20 sessions of HBOT and then if I have teeth removed then another 10 sessions. It is an amazing place! Apparently most of their clients go there because of ORN (and mainly of the jaw). They are part of the HOPON trial which has been going for 15 years with very good results. Some of their patients travel all the way from Cumbria and some have B&B during the week paid for by NHS, many also get hospital transport as its to do with cancer.
For people who are nervous about HBOT this shows a picture of the chamber (the MS thereapy centre ones tend to be much smaller) http://www.bbc.co.uk/news/uk-england-21260245 (this one is in Plymouth but is the same as the one in the Wirral.) It is enormous - much bigger than a garden shed and has windows and is very bright. A member of staff also stays in the chamber with the patients so very safety/welfare conscious. They are very happy to have people just come to have a look and even sit in there with the doors open. Also apparently funding for HBOT at these Spire Hospitals is still readily available in England and now comes straight from the Government rather than through the GP /health boards - something else that many people are not told about.
We really need to spread the word about what is available.....
x
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.
Yes it is a very lonely and frightening experience littlerosie. It seems that the forum is the only place to 'talk' to others in a similar position. So one positive in all this negative. We have to keep going and keep some hope. Keep strong.
My last 2 posts were in reply to posts that were notified to me by email as having gone on the forum, but they don't seem to be here. Maybe they were on another thread, but I can't find them. Anyway, thats why my posts may seem out of context.
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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