Neck hardness and jaw numbness

I’m a month ahead of you Rut, although I had a unilateral tonsillectomy too. The side of my tongue and cheek still get sore, in fact it feels as though it’s never properly healed in there. Certain hot drinks and food can exacerbate it too. I’m assured by my surgeon that this is caused by scarring from the RT. My jaw and neck feel quite stiff and numb still - probably some fibrosis caused by the RT.  This on top of some nagging, mild lymphodema. So I still do neck exercises and massage religiously twice a day and smother it in Aveena moisturiser, which seems to help. However, it’s all quite liveable with and doesn’t interfere massively with my life. Although I do worry sometimes I can assure myself most of the time that this is just the new me! 

Hi Rut. It sounds like radiation fibrosis. Mark has the right idea in massage and exercises. I helped my saliva along with sugar free chewing gum which I used for a couple of years. Now nearly four years on I have some to hand to clean my teeth after meals. Auricular acupuncture is worth trying too. There are a couple of entries about it in my blog. It might be worth a go

Hi Rut as others have said we all have side effects I have a bit if radiation fibrosis doesn’t effect my daily living. Saliva can be problematic for most if us I’m still getting improvements even 4 years later. I use sugar free gum oribut in my case xyimelts at night and I did have auricular acupuncture which helped immensely. Plus for firstb3 years I never went anywhere without water bottle in hand 
Hazel x

Thanks for the replies, I’m doing the peppersmith chewing gum, xyimelts at night and sipping water through the day. I’ve also tried auricular acupuncture which maybe is something I’ll try again. I did think it was fibrosis but sometimes you need a bit of reassurance. I’m seeing my ENT consultant in a few weeks for my 3 month check.

Have any of you heard of Hyperbaric Oxygen Treatment (HBOT) for the fibrosis and saliva glands? 

Hi Have heard if it but not for fibrosis or dry mouth only  for ORN who’s is osteodencrosis of the jaw. Interesting if you can have it for fibrosis and dry mouth. My dry mouth really improved after the 2 year point. There’s still time for yours. 
Hazel 

I will be speaking to my ENT about HBOT. I can get a test HBOT procedure locally to me and they have said they do treat HNC patients. I’ll let you all know what my ENT says and after the treatment if I do it.

Rut said:

Have any of you heard of Hyperbaric Oxygen Treatment (HBOT) for the fibrosis and saliva glands? 

Yes but the jury is out. There has been research to show its helpful  I suspect you would be able to get it only privately 

Hi sorry only just seen your post. I had HBOT but for for osteoradionecrosis. I had daily sessions for 12 weeks. I had a really good response to it. It saved my jaw and prevented me needing further surgery

I was really fortunate, it was NHS funded at the time (17 yrs ago) I imagine that won't be the case these days. 

Hope you get some help with it. I've learned to cope with the dry mouth over the years, nothing really seems to have helped. I suppose it's just something that we have to live with but it's still not pleasant.

Trish xx

Rut said:

Hi, I am 21 months post radiotherapy treatment for left tonsil cancer. Saliva is still an issue and I still have some soreness to the side of my tongue and cheek. I have also noticed some numbness to my jaw which is mostly in the morning and my muscle from the back of my ear down the side of my neck feels hard compared to my right side. Anyone else had these or similar  issues?

Hi Rut....just remembered. Some hospitals are trialling Photobiomodulation for all sorts of radiotherapy induced effects. It used to be called Low Level Laser Therapy. It might be worth asking your team.

Hi. Does this peppersmith chewing gum, help with very dry mouth I get in middle of the night?