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.
Newbie needing advice: Hi all, i'm new to the group. I... - LSN
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 aftercancers.com/my-lymphoe...
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 aftercancers.com/category/l...
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!