Radiotherapy to head & neck0

Hi Camphill

I'm afraid I have no relevant experience of ORN but occasionally someone does post on the forum.

If you type Osteoradionecrosis into the search bar some past posts should come up.

Wishing you all the best.

Linda x

Hi Camphill, so sorry you've ended up with this. It's a fairly rare complication but pretty nasty if you do get it. Linda has mentioned a search and if you go to this THREAD it's the latest one here

Hi Camphill

Sorry to hear about the osteoradionecrosis. It must be really disappointing 14 months after your treatment. The thought of another operation must be daunting but I hope that it will make a big difference to the pain you are currently suffering.

My first operation in 2013 was a partial mandiblectomy but not due to  osteodianecrosis. Only part of my mandible was removed so I did not need a jaw reconstruction. I know there are other people on this forum who have had a total jaw reconstruction and may be able to give you more information.

 It took about 8 weeks after my partial mandiblectomy and then I was feeling as though I was getting back to normal. You have to get used to working with no teeth on that side.

I also suffered from trismus after this operation and could only eat soft food. I still have the trismus but you do get used to a difference in your diet after a while  don’t you? Probably this will not be very different after your operation. It is important to keep up the jaw exercises so your mouth opening does not reduce further.

Wishing you all the best with any further treatment and I know you will improve with time so please do remain optimistic.

Lyn

Hi Sophie66

Many thanks for your thoughtful response to my first foray on this site. It does improve my demeanour to know that you have had surgery to your mandible and have come out the other side.

My wife has become very creative with food preparation such that most foods are available to me. Long live the hand held blender and lots of gravy. Also our slow cooker is great for stews.

Thanks again

Is your MaXFax consultant open to exploring hyperbaric oxygen? 

I have asked about hyperbaric oxygen, but my MaxFax consultant dismissed it because recent trials were inconclusive. 

It's a pity. I would give anything a go...but I guess it's atrociously expensive. It's very popular in the USA where treatment is insurance driven.

I have Acupuncture which is similarly dismissed for my xerostomia. It works for me and my Oncologist is interested too.

Hi Camphill

So sorry you have osteoradionecrosis. Hopefully when you have your surgery this might help also with your trismus as well as all the other things.  I had what I believe to be radio necrosis in my cheek after surgery probably due to high radiation prior.  I can remember the pain.  I did have hyperbaric treatment to prepare me for surgery and hyperbaric after surgery.  I had the wound debrided a few months later. Lucky for me this healed and I probably think having hyperbaric helped.  

I hope things improve for you

best wishes

Nicky

Hi Camphill

Sorry you’ve found yourself facing a major op due to treatment. Like Linda says I can’t offer any solidly advise. I too use my slow cooker at least twice a week. I have also recently bought a soup maker after years of saying no. I am finding it excellent 21 mins from start to finish anything goes. 
good luck 

Hazel x

Hi Camphill

The food issue is my major challenge but have got it sorted out now. It wasn’t so bad after my mandibulectomy but unfortunately had to have a second operation in 2019 which made things harder.

Going out used to be a problem as there was hardly anything on the menu that I could manage. I am an expert now at carrying my own food. While my husband is tucking into a roast I get out my own bowl and soft food and quietly eat it. I take something that I don’t mind eating cold.  I also carry my own mug and soup in a vacuum flask and pour that out in the restaurant. No one has ever said anything. (We are lucky in Australia as Covid rules are much more relaxed as cases very low so can go out fairly normally.) So much of our socialization is around eating so I don’t want to miss out on any get togethers.

I do enjoy looking at all the different food that other diners are eating and the aromas are still great. Initially I was a bit sad that I could not eat any of it but time is a great healer and I am over that now.

Fortisip is my backup in a difficult situation. I know lots of people say it tastes awful but I have not found that fortunately.

I have recently graded up from soups to soft food which initially was all I could manage after my second operation so I am thrilled. However it is amazing how many different soups you can make to keep things interesting.

You are so lucky to have a wife who can help out with the food issue as I have to go it alone as my husband is no cook.

Once you get your head around it it’s not that bad.

All the best

Lyn