Lymphoedema post dmx In neck : After a double mastectomy... - LSN

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Lymphoedema post dmx In neck

Rosiebunny
Rosiebunny

After a double mastectomy and having, problems with both arms, I wear compression sleeves, I also have fluid on my left side in particular (chest, armpit) also now developed in the left side of my neck, and collar bone it does go up and down. ? Any advice in particular in how to cope with the neck swelling would be most helpful.

12 Replies
oldestnewest

MLD perhaps - how long since surgery?

Rosiebunny
Rosiebunny
in reply to Lynora

9 years . Have been to lymph clinic had MLD for chest . The comment I initially had was you cant get lymphoedema there, from the clinic nurses. !!

Lynora
Lynora
in reply to Rosiebunny

Hard to be polite.... but words fail me!

Could you see an independent therapist?

Fotogo
Fotogo
in reply to Rosiebunny

My lymphedema surgeon tells me the same thing. I just had lymph transplant for arm.

Self MLD from face > neck. The problem is that more fluid ends up in your chest, and this happens by itself when you're standing as fluid moves downwards. I suppose you'd then have to move the fluid from your chest to elsewhere. Have you been seen by anyone at St Georges?

No , is that where specialists are?

Yes. As CCT67 says you should also look into an MLD therapist in your area. Your GP should be able to help with this.

Lynora
Lynora
in reply to On_porter

Some GP’s might know of independent therapists, but many have to start with NHS providers, as they are unable to refer for private treatment.

mlduk.org.uk has a register of UK MLD practitioners.

buddlia12
buddlia12
in reply to Lynora

Dear Rosiebunny .... another tip would be: as well as MLD uk register which only has therapists who are registered with MLD uk, you could also check out BLS/BRITISH LYMPHOLOGY SOCIETY REGISTER. It's on the BLS website and lists private and NHS/charity lymphoedema services throughout the uk.

Yes, Lymphoedema can develop in other areas adjacent to the originally affected area. Your clinic nurses clearly weren’t very experienced or knowledgeable! If they won’t do MLD in your neck then go private.

I have regular MLD with an independent therapist. It gives me huge relief in my neck and head which certainly can have Lymphoedema. Doing daily self drainage on affected areas also helps. To find a qualified therapist in your area look on

mlduk.org.uk

Think the key thing with lymphoedema is not to take 'No' as an adequate response!

All I can suggest is massage yourself frequently and ask about liposuction which l know little about .

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