Reply to "Osteoradionacrosis"

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
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