Talk

Advanced search

Lymphodeama

(8 Posts)
GinisLife Sat 04-May-19 12:18:00

I've recently had radiotherapy for a tumour in my tongue. I'm left with a "turkey neck". It's fluid collecting where a mans Adam's apple is. Every day, a few times a day I'm massaging it downwards to try and help clear it but it's doing nothing. This morning it's worse than ever and feels like it's pressing on my windpipe. Any tricks/tips/cures please ?

OP’s posts: |
Footle Mon 06-May-19 19:02:45

Is there a specialist nurse who can advise you?

AlexaAmbidextra Tue 07-May-19 04:16:58

You need a lymphoedema therapist. Do you have a specialist nurse you can ask for help to access this treatment? Not all areas have lymphoedema practitioners available on the NHS. If your local NHS doesn’t provide this you may need to access it privately. You can find a practitioner in your area on the MLDUK website.

www.mlduk.org.uk

GinisLife Tue 07-May-19 21:41:10

The nurse I see in clinic has said 3 times she will refer me but not heard anything. I'll have a look at the link thank you.

OP’s posts: |
AlexaAmbidextra Tue 07-May-19 22:13:18

You really need to push for referral. You don’t need to live with this discomfort, particularly as it seems to be impacting on your breathing. You won’t be able to improve it yourself as it’s a very specific method of massage, although when you get to see a practitioner they will probably teach you self-massage. If the nurse doesn’t step up, give your consultant’s secretary a call. I say this as a former nurse. You shouldn’t have to put up with this situation. There is private treatment available but it’s costly and depending on where you are it may well be available on the NHS. If you want to PM me and let me know which hospital you’re under I might be able to point you in the right direction.

GinisLife Mon 13-May-19 07:31:56

@AlexaAmbidextra the hospital have been in touch now thank you. Rang me on Friday and I'm going to the lymphodeama clinic on Thursday this week - so good service once they got their act together. It seems I'd been referred to a south Birmingham clinic but I'm out of their area so had to be transferred. Hopefully they will clear it as it's unsightly and uncomfortable at times.

OP’s posts: |
AlexaAmbidextra Tue 14-May-19 00:43:32

Glad to see you’re getting some help at last. 💐

AlexaAmbidextra Tue 14-May-19 00:44:53

Meant to say, lymphoedema isn’t a curable condition so you may need further referrals in time to come as it may well recur.

Join the discussion

Registering is free, quick, and means you can join in the discussion, watch threads, get discounts, win prizes and lots more.

Get started »