Alex had 3 lots of treatment called debridement.
This was was removing the necrosed bone down to healthy bone and then you just have to hope it works. Sadly for Alex it didn't and eventually the bone became to brittle it fractured.
Alex is still in hospital recovering from surgery,it is huge surgery but I am hopeful this will be the turning point. Alex saw a speech and language therapist yesterday as he has swallowing issues.... Another problem from RT, this lady suggested he try peg feeding for a few months to help address his weight loss of 4st. FINALLY someone is listening and going to help.
I am so sorry to hear about Alex's experience and hat someone is finally listening, I have been fobbed off by 2 surgeons who did not want to deal with it. Did the surgeon say if he had not had debridement this would have still happened? My surgeon is recommending I have debridement but saying I can wait a few months as I am not in pain at the moment, although my jaw is slightly swollen and I have spasms in my jaw, I can barely open my mouth - my concern is if I leave it it will get worse. Was Alex in pain when he had debridement or was he given any options to wait? Thanks for your reply.
Alex was in pain. The necrosed bone broke through the gum and was visible in his mouth.
He would experience problems with eating and drinking especially anything cold. The first time it happened it was like a piece of coral and rubbed against his tongue causing a huge ulcer.
His surgeon said ORN is like chasing a wave, so since last May we always knew recent events might happen. Initially he was given a 70% chance that it would work. If we think about how things have turned out we can become quite upset and angry that we were not informed in the very beginning that RT can cause this problem. We was warned about everything else. It really is a traumatic condition to have to deal with especially if you need a bone graft.
necrotic bone is also visible in my mouth but although I was in great pain for months it has now eased off. that is why i am concerned about debridement in case it trigers it off worse again. Did the doctor ever say he knew of cases where it stopped and remained stable?
Penny - ow is Alex getting on? I pray e is recovering well. I flew to London a few days ago and saw a surgeon here. Seems I ave a hairline fracture of my jaw so debridement not an option now. As the pain is not too bad at the moment I will not be having surgery immediately but eventually .
I went to London to get a second opinion from a surgeon there. The X rays showed I had a hairline fracture of the jaw which had not been noticed here. He recommended not to go for the debridement procedure I had been advised to have as it would weaken the bone further. I am now praying for the fracture to heal and the ORN to halt progression. i am not in pain at the moment but having a lot of cramps in my jaw which are painful at the time but pass. I am taking pentoxifyline and vitamine E in hope it may help stabilise ORN.
Penny - how is Alex??
Hi Littleros
I went to London to get a second opinion from a surgeon there. The X rays showed I had a hairline fracture of the jaw which had not been noticed here. He recommended not to go for the debridement procedure I had been advised to have as it would weaken the bone further. I am now praying for the fracture to heal and the ORN to halt progression. i am not in pain at the moment but having a lot of cramps in my jaw which are painful at the time but pass. I am taking pentoxifyline and vitamine E in hope it may help stabilise ORN.
Penny - how is Alex??
I've not been on the forum for a while - mixture of getting fed up with all the spam and mistakenly deleting wanted mail along with block deletions of spam and also I have ME which means that I get terribly behind with things.

I am still waiting for HBOT – it is now booked for July. So that's 18 months after my consultant requested I be referred for it – a ridiculously long time to wait for treatment for such a degenerative and chronic condition. I think I did right in taking myself off the MS therapy centre for some sessions as the ORN did settle down. But I haven't been since March, when I had the consultation about receiving HBOT on the NHS thinking that I would get the HBOT during April or May. My rear tooth has started to play up a bit again – the gum feels raggedy, has been bleeding and seems to have receded even further. I'm going on holiday in June, so hoping everything will hold together until the HBOT starts.

Reading through lots of the posts again it seems that there is no standard procedure for dealing with ORN, with different consultants having approaches.

Suefew – how are you getting on with the pentoxifyline and vitamin E. Any side effects with the pentoxifyline? I have Vit E on prescription from my GP, but I have heard that the 2 go together. For some reason my consultant didn't want to prescribe pentoxifyline and told me it was difficult to get the Vit E in high enough doses! (a rubbish excuse if you need 1000mg you can just take 2 x 500mg or 5 x 200mg)

Penny – how's Alex? I'm posting in a new topic about people not being warned about the risk of ORN prior to RT – I haven't come across one person yet who was warned – it seems there is a conspiracy of silence....I too am very angry that I wasn't warned – and there are different options that could have been taken at the time to reduce the risk ….

Littlerosie – glad to see you still posting – how are you?

xxx
Littlerosie - I saw Mr Andrew Lyons at London Bridge Hospital.He has a keen interest in ORN. The fracture was diagnosed by X ray, I had had an X ray a week earlier here but the surgeon missed the fracture!
Getting on fine with pentoxifline, no side effects, it is not proven to work but it has stabilized the ORN in some patients who have taken it.
As you say Hela there is no standard procedure, ORN is unpredictable. At the moment I am not in much pain. I get cramp like spasms in my jaw which are painful at the time but it passes.
Hi Suefew

I think it was me who told you about Andrew Lyons. I went to London to see him in December.
He told me (in a 10 minute visit) that I do not have ORN at the moment.

Quite a surreal experience going to London Bridge Hospital. I have never been met before with a doorman in a top hat. It was like going to Harrods.

What are your options now?
Thanks for giving me his name. At least he has knowledge of ORN. That is good news you do not have ORN. There are not many options really, I will go back every 3 months so he can monitor the progress of it, seems stable at the moment. If the pain becomes unbearable I will have to go straight back to London, I think the only option then is surgery with bone graft.
I have googled Andrew Lyons and the London Bridge Hospital. He actually talks about ORN being 'cured' which is the most positive I've come across. Its interesting that he treats ORN with pentoxifylline & Vit E in the first stages and if it doesn't 'cure' the condition in 6 months then other medication is used and then if that doesn't work then surgery. This seems to be the opposite to my consultants who seems go for surgery first and then if the ORN comes back then they prescribe the drugs.

I notice that it is a private hospital and wondered whether they take NHS referrals. Littlerosie, did you manage to see him on the NHS or did you have to see him privately? Its so important to be able to trust your consultant. You seem to be in good hands now Suefew.
Interestingly Andrew Lyons "has a special interest in the treatment of osteoradionecrosis avoiding hyperbaric oxygen therapy." I wonder why he avoids it.
Suefew & Littlerosie - did he mention his views about HBOT to you when you saw him?
Yes, I feel confident in Mr Lyons. I just wish i had seen him sooner but better late than never. He did not mention HBO to me but he already knew that despite having 40 HBOTs the disease had progressed. He also thought that small debridement surgeries would be counterproductive in my case.This had been my gut thought also as i do not think my jaw can take anymore trauma.
Out of interest Suefew, what depth did your HBOT dives go to and how long were you in the chamber at this depth, and did you have the dives on consecutive days? I ask because, the MS therapy centres maximum depth is 33 feet and you stay in for an hour. This seems to be acceptable/recommended for ORN by the HBOT people at Ninewells Hospital in Dundee. However, the chambers at the private hospitals dive to a depth of 45 feet and you're under that pressure for a total of 90 minutes. (The difference may be significant given that the NHS in England & Wales changed their policy on funding HBOT April 2013, so that now they will only, if you're very lucky, fund HBOT at these private hospitals).
I realise that HBOT might not work for everyone and for others it seems to work exceptionally well (so many variables I suppose to do with dose of RT and how much damage has been done, how early its been caught etc etc).

Pleased for you that you have found you answer with Andrew Lyons.
Hi Hela

I cannot remember the depth but I was in the chamber for 1 hour per day. I had 4 dives per week. I think ORN is so unpredictable and acts different from person to person that no one really knows what works and what doesn't.The uncertainty of it makes it so difficult to live with!
I wonder if that extra depth, length of time and frequency of HBOT makes the difference between whether it is effective or not for some people – and may be that is why funding isn't available for the HBOT at MS therapy centres any more. Problem seems to be, for me anyway, the length of time it takes to get the treatment. The other week my tooth started to play up again and the gum felt a bit raggedy. Now it feels that a little bit of bone is poking through. I'm going on holiday next week, so I'm hoping that things will not deteriorate while I'm on holiday. I am so cross that I've had to wait until July for the HBOT - if I'd had it sooner..... They know that ORN is a degenerative condition yet they leave you hanging and waiting without treatment for so long.
Hela It's not fair to keep you waiting and worrying if it's getting worse or not.
Littlerosie - It takes 8 hours to Heathrow if I take the expensive direct route or 12 hours indirect - but worth it to get the right surgeon who understands the disease as much as anyone can!
Hi The ORN is stable at the moment and has been since last August. I saw Dr Lyons in London and have been taking pentoxifline and vitamin E for 12 months. Pain is much less, still swells up and is then quite painful .but overall so much better. I am not sure if I posted that I found out my jaw was fractured last May, not sure if it's healing yet but will get an update at the end of the month.

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