Phlebo-lymphedema: I saw my doctor the other day. New... - LSN


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I saw my doctor the other day. New diagnosis, phlebo-lymphedema in my lower extremities. My skin has lots of blisters and open sores. Yes it hurts. I can’t wear compression hose or use my massage pump. I see a specialist in 3 weeks. Has anyone been diagnosed with this? What is the treatment? I’ve been reading everything I can get my hands on. Thank you for any advice you can give.

4 Replies

Are you under the care of a vascular consultant? Do you have a lymphedema therapist? There are a couple f organisations in the US where you can get guidance on how to self-treat. A few of the members of this site are based in the US - hopefully they will post links.

Z26Y25 in reply to Lynora

I just got diagnosed 3days ago. I will see a specialist on October 13th. We will then decide treatment.

Have they been told they have Lymphoedema? They only need to go to hospital if their leg is red and hot as this could be a bad infection called Cellulitis. They can give antibiotics and IV if needed. If it is a smallish open wound you can treat it by cleaning with water and covering with a dressing. If in the UK ask your Dr. for telephone call/video call if you can't get an appointment or don't want to go there. Dr can then prescribe Inadine Dressiings and Metapore Dressings. You can do this yourself if physically able. I'm not a medical professional or expert. I'm telling you this as my leg is also leaking clear fluid at the moment. I however have both Lymphoedema and Lipoedema which is called Lipolymphoedema. I hope this helps. Message me if you would like. Love Alison x

Z26Y25 in reply to TheClangers

Phlebo-lymphedema is lymphedema and venous insufficiency at the same time. Yes I have lymphedema. Yes I have venous insufficiency. My doctor last week said no to cellulitis. Yes my legs leak too. I have had large blisters. I know about wound care. With my eczema acting up on my legs and open sores, I can’t do my pump and I can’t wear my compression sock. For now the best thing I am doing is elevating my legs several times a day and do self leg massage.

Thank you for your reply.

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