Lymphoedema in neck

Hello if you haven’t already ask to see someone in the lymphoedema clinic. They can show you how to massage the area to help drain the fluid. Mine wasn’t too bad to start with but I massage morning and evening for a few minutes and it does make a difference. I also have dry mouth that keeps me awake at night. I have found (off the MacMillan website) something called XyliMelts. They are available from Amazon and other websites. I’m going to ask my local pharmacy to see if they will order them in. They have been brilliant in easing the dry mouth condition and allowing me to sleep better. They stick to your gum line and last for the majority of the night. I did read the reviews and they don’t suit everyone but well worth a try. I did ask my GP but unfortunately not available on prescription. Hope this helps in some way. Keep going. Everything is always worse at night 

Hi Germolene

So sorry your struggling with your lymphodema i have a simular problem with tightining under my chin.

I have been under the lymphodema clinic they gave me exercises ro do and have just enrolled me into 2 weeks of massage they reckon it will help no ends so i was really pleased.

Has your team put you forward for it probably will help you it did me and the staff are fantastic.

Hopefully they can get u a appoint.

Good Luck

Chris

Hi Germolene

I definitely recommend Xylimelts for a dry mouth as this really helped me. It just sticks on your gum and keeps your mouth moist all night. Unfortunately I am unable to use them now as I no longer have any gums to stick them to but have found Biotene dry mouth moisturinsing gel works well. I put a dab of it on my tongue when I wake up with a dry mouth and that works straight away. I then can get quite a few more hours sleep before I wake up and need to put another dab on my tongue. Sips of water help but only very short term.

I managed to get both of these at a chemist but I live in Australia so might be different on your side of the world.

Quite a few people on this forum have had some success with auricular acupuncture to help with their dry mouth. Hazel and Dani will have more info. as they had this with good success. It has to be auricular acupuncture which concentrates around the ear.

I tried it but as I have had radiotherapy twice it did not help me but I would give anything a go as dry mouth can really affect your quality of life.

Lyn

Hi Germolene. Great name....took me back to my childhood and my mum slapping masses of the stuff on grazed knees from falling off the bike and out of trees.

Have a look at my blog.It has two entries on Auricular Acupuncture and one on a simple Lymphoedema massage....but do get yourself back to your CNS to see if they can arrange an appointment at a lymphoedema clinic. Most large hospitals have them, it's just getting an appointment these days.The idea is to stroke your skin gently towards intact lymph nodes. If you remember where your neck burned you'll probably recall that it was left intact behind your ears. There are lymph nodes there so that's a good place to aim for.  I used to do fifty strokes each way on my neck every time I went to the loo and could sit quietly 

Hi Germ :-) I too have neck dema as a result of double neck dissection and expecting some further change as I head into radiotherapy. As others have said defo look for a clinic - mine is actually outsourced by the NHS to hospice which sounds scary at first but makes a lot of sense and they are lovely. Mine has definitely improved but is taking a long time (imo) and makes life uncomfortable at best. I feel your pain!