Hereford collar. What now?

Yes, not sure if the nurse was erring on the side of caution or if she could tell it’s likely to happen from the quick feel of my neck that she had

Dani-I have to shut my eyes whilst there are needles wiggling around in my face (such a woose) but, I do think it has helped. I have another 3 sessions to go over the next 3 months, so I am hoping for a little more improvement. Def can eat stuff I found difficult a year ago like chicken. Even a 10% improvement would be amazing. It was a shame this treatment wasn't mentioned until I brought it up after hearing about it on this site and thankfully, my Mac nurse at the Marsden is amazing if she can do something for me, she will.

Interesting to hear acupuncture works so well! Would definitely like to try it

I am assuming I would have to go privately but I'm not sure how to go about finding someone reliable and experienced? 

Lots of practioners on Google but ....

I emailed lots of practitioners to see if they did Auricular acupuncture for xerostomia and if not might they have an idea who did. 

Trev, perhaps try ask your hospital where your team are first. I asked my practitioner if she could recommend someone for after the Marsden wouldn't treat me any more and she was reluctant and even suggested I shouldn't seek out someone else. I have no idea whether that is because my 10 sessions would be more than enough to take me as far as success would ever go, or if she had issues with others not knowing enough about auricular treatment. I will learn more (hopefully) at my last session, but sadly that won't be for another 2/3 months. Like Dani, I would only go with someone who knew exactly what they are doing where you have had the sort of treatment we have had.

Hi Yes I am 30 month and the last few months only happens when I am either chopping veg or baking I was getting a shooting pain at back of neck on heavily radiation side. Like a shooting pain. Saw ent consultant December didn’t say anything until she mentioned  it when checking my neck she said it’s only  a tiny bit of fibrosis. So she referred me for physio via telephone call of course. I do exercise   I walk ride my bike etc so was told and please no laughing.

stop doing the chopping stand upright and pretend that someone is throwing a custard tart (like at the circus as a clown) and pull a face ugh Guess what it works , at first you feel like a fool well no more of a fool than strapped to a table with a mask on ! But now it might happen once a week or so.

The other exercise is to move you right slowly to look over your shoulders do it  5 times a day or s alternating right then left just to stretch the tendons .

Hazel,xx

HI Trev  Took me a while to locate one who would take me Yes I did  have to pay  privately but worth asking your hospital some do. Like Dani says you need an auricular acupuncturist.

Hazel x

Hi hazel

There is a palliative care unit (NHS) by me that I attended for lymphodema ..and they do the acupuncture too.

The challenge will be getting myself referred I have a disinterested team 

I know I am digressing from the lymphedema issue but wanted to comment on acupuncture for dry mouth as it has been mentioned.

Dani recommended auricular acupuncture to me a while ago to try and help with my dry mouth issue. I had radiotherapy on the right side of my face in 2013 and the dry mouth wasn’t too bad but with more radiotherapy in 2020 on the left side of my mouth the dry mouth issue became a much bigger problem.

Xylimelts did help but I was looking for something a bit more permanent, although I do recommend the Xylimelts for use during the night as they really help.  Most of you probably already know that they are a dissolving type lozenge that sticks to your gum.

It took me a while to track down a private practitioner who did auricular acupuncture but am so glad I found one. I have now had 5 sessions and the dry mouth issue has definitely improved and I have been really happy with the result although I am not expecting 100% improvement. I don’t have to sip water during the night now and even forgot to take my water bottle with me when I went out the other day.

He puts lots of needles in my ear and although I was a bit apprehensive at first in relation to potential pain this is minimal and some needles I don’t feel at all.

He also suggested some things to add to my diet such as almond milk and walnuts ground in honey (not supermarket honey but honey from the beekeeper which I found in my health shop. Apparently honey in supermarkets can be watered down. Dani will be able to tell you more about that ) He also recommended peppermint tea to help with dry mouth. I am giving them all a go although can’t manage the ground walnuts as I can’t tolerate the texture even when almost ground to powder.

I would recommend anyone with a dry mouth issue to give auricular acupuncture a try.

Lyn