Osteo Radio Necrosis

Hi I am 4 years post treatment for tonsil cancer I suffer from burning tongue and mouth syndrome. I by trial and error I  can identify my trigger foods which tend to be most cheeses apart from soft cheese most yoghurts can tolerate Greek yoghurt just about. no vinegar mustard or citric plus anythjng fermented. . I also use twice a day a propolis mouth wash available on Amazon 6 drops in like warm water . I find it help tremendously a lady in here a few months ago Hope60 investigated ut for her hubby before treatment started. Now if I really want a cheese sandwich I pay the consequences as life’s too short not to have some pleasure. I also use bioxtra mouthwash regularly, I have had any conversations with my ent consultant and sadly there’s no magic want for radiotherapy induced burning tongue  it’s a relatively rare syndrome but i do sympathise with yiur hubby it’s nit pleasant. I brush my teeth 30 minutes after eatung religiously and use tee pee interdental sticks .i visit dentist every 3 months fir check up and fluoride varnish plus use duraphat toothpaste  interspersed with oranurse toothpaste when mouth is really bad. 
Sorry can’t help with the osteo necrosis. 
Hazel I 

• Thank you Hazel this is really helpful. It is interesting that you mentioned avoiding certain types of food that make it worse as  my husband said this evening that he has noticed the burning is so much worse after eating some types of food but is not sure exactly which ones are responsible.  I think after reading your reply he will now have to start to keep a diary to enable him to work out which food he will need to avoid.  My husband's Consultant also stressed that there is nothing apart from last resort surgery that can be done sadly.  My husband already uses the Duraphat toothpaste but he will be interested in giving the mouthwashes you mentioned a try.  His Consultant also mentioned that there are now some hopeful drug trials taking place (but sadly not in his hospital) so hopefully in the future there may be a hope of a drug that may help.  Many thanks for your reply once again.

Welshpony said:

His Consultant has advised him that the only treatment for this  would be surgery as a last resort.

Ask for a referral to Guy's hospital. The Consultant in charge is Vinod Patel. There is a medical treatment for ORN which involves Pentoxifylline and Tocopherol. There are some good results reported.

Hi no problem. The bee propolis  tastes yuck but I’ve been using it 3 months snd definitely an improvement. I kept a food diary  to isolate what my triggers were. Will be interested to know your husbands when you’ve a minute. Sorry forgot about Vin paleri at Guys he’s doing great things on reoccurrence s and ORN.  ooos worth asking g for a referral definitely. 
Hazel 

the mouthwash is available on prescription. 

Thank you Dani for your reply.  I am now wondering if the Pentoxifylline and Tocopherol treatment you mentioned is the drug treatment  trial my husband's Consultant referred to.  Many thanks once again.

Caroline

Maybe sooner rather than later. There is actually a trial in progress that has patients on it during treatment to see if it might prevent it in the first place.

Regarding the burning mouth.  I do get it sometimes along the side of my tongue if I have perhaps had too much of a food assault....but it goes. I had a very "hot" mouth for a few months but it got better

Re the trial...having read your reply to Hazel. You don't have to miss out on treatment with PENTO. It's available outside a trial even if your hospital doesn't offer it

Hi Welsh Pony

Sorry your husband has been diagnosed with ORN. I would ask your consultant about Pentoxyfylline and vitamin E. I am currently taking this for my ORN. Dani has given good advice about this and is worth asking about. 

I can have problems with burning  mouth problems, for me it  can be to do with infection plus oral thrush. I have been taking antibiotics and this seems like something I can be prone to and need meds for. For me I still find the cool boiled water salt water rinses useful at times but this is for cleaning purposes not pain management. 

Best wishes 

Nicky

Hi Nicky

Thank you so much for your reply which is really helpful we are definitely going to ask about the Phentoxyfylline and vitamin E. 

It is very interesting that you mentioned a mouth infection possibly triggering a worsening of your  ORN.  I am wondering now if this has been the same for  my husband's ORN. 

A couple of months ago my husband was admitted to hospital as an emergency with a  serious chest infection (not Covid).  Following various tests it was confirmed that the cause of this was an infection  around his upper  teeth that had spread to his lungs.  They  advised removal of the  teeth which they said had possibly been  damaged by his  Radiotherapy treatment and he was  given IV  antibiotics.   He later had the teeth  removed by the hospital Consultant Restorative Dental Surgeon and was then diagnosed with ORN.  

Since having the teeth removed in hospital he is slowly showing signs of some improvement in his condition (apart from the awful remaining burning sensation in his mouth).  He is going to follow all the really helpful advice given here and is hoping  it may help him  cope with his condition better in the coming months.  Many thanks once again.

Caroline 

Hi Caroline

I am sorry for what your husband is going through but glad you say he is showing signs of improvements.

 For me my infection was an indication and symptom of my ORN which was also shown on MRI.  The antibiotics help get on top of the infection and then this has got my pain under control. The burning mouth for me is down to infection plus oral thrush. Being on antibiotics has made me more prone to the oral thrush, so  I take meds for this too when needed.

Yes do ask your consultant about the pentoxyfylline and vit E or possibly a referral it is worth asking. 

 Best wishes 

Nicky