Newbie needing advice: Hi all, i'm new to the group. I... - LSN

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Newbie needing advice


Hi all, i'm new to the group. I have had primary truncal Lymphedema for eight years now, and have not seen anyone regarding lymphedema since 2012. My consultant at the breast clinic told me I was a mystery, they could not find where my blockage is after specialist scans, I have only had 6 sessions of massage therapy in 2012, I was told at the begining of treatment, that I would be measured for a compression garment and never was. I have swelling under my arm pits, my breasts are that heavy with fluid that I can hardly breathe when lying down, my lymph nodes on my neck are swollen often and I look like I have the mumps. It is getting hard to live with and feel like I have just been left to the side.

6 Replies

Get your GP to refer you to your local service - again.

There are new diagnostic techniques available, which might be able to give a definitive reason for your problem. Are you in the UK?

in reply to Lynora

Where do you live? I am assuming it's in UK as other countries would not have left you in this state. Go back to GP and create Merry Hzzl ! Demand better care - it's about time we got it. A prominent vascular surgeon recommended the advice here

in reply to veriterc

Thankyou for replying. I am in Scotland and the only specialist in my area is a nurse she told me all she could do for me was the six sessions and a compression garment, but never got one.

If it's OK to ask what were the specialist scans you had?

in reply to Perido

I am sorry pedro it was that long ago, the could not find the blockage but discovered arthritis in my neck.

I suggest you get in touch with your MEP and DEMAND he/she asks the Scottish Minister for Health why you have been neglected. Have a search around on

for statistics to back up your letter.

Also become a member of LSN and ask their advic.

I have received a very complimentary back-up from an eminent Scottish vascular surgeon about the info posted on the site address above - but sadly he is retired so I can't refer you to him. However, you have to bang on and bang on about better care. It is a scandal that it is so bad in UK, but sadly most Lymphies are OAPs, and don't have the will to fight - and the NHS knows this!

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