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 !