A peek behind the bandages…

Hey Lymphies,

I’ve just uploaded two more videos to show you how my leg is looking and feeling- in the flesh! I think this is much better than photos because like this you can see the skin move and get a sense of the softness that is now present in my leg.

I also just created a YouTube Channel to help share these videos to a larger audience. For me, this is all about creating awareness of Lymphedema and giving hope to those who suffer from the condition.




3 thoughts on “A peek behind the bandages…

  1. Casey says:

    Hi. I happened to stumble across your blog here while researching lymphedema . About three years ago was diagnosed with primary lymphedema in my left leg . One day I came home from work and my wife noticed my leg looked a little swollen. I started to press on it I noticed the pitting .As I didn’t know what pitting was at the time , I kinda freaked out. We went to the E.R. That night they thought I had a blood clot, was scheduled for surgery the next morning . Found out there was no clot . The next three months was full of M.R.I ‘s , ultrasounds ,blood work , at about the end of the third month they flew in a specialist to perform an exam ( can’t remember what it’s called) were I laid under a machine while they injected a fluid between each of my toes on both feet . ( super painful as the fluid was being injected)They watched the fluid travel through my lymph nodes were my right leg they followed all the way past my groin. My left leg the fluid stopped somewhere . After this they finally said ” you have primary lymphodema and that I was born with it and only now it’s showing up ” I’m 34 now been athletic my whole life the doctors are always baffled why I have this . They tell me over weight or unhealthy people have these problems . It’s so crazy that doctors are so in the dark about lyphodema. The proportion of my legs are about the same as yours . I wear my compression stalkings religiously to try keep it looking somewhat normal. I don’t know anyone with this condition it sucks big time . I still worry if it’s genetics as I have two little girls 6 and 2 . I could not imagine them having this. Sorry for the long winded reply . I never participate in social media at all but i could not resist when finding someone going thru the exact same thing . I really hope your surgery cures your leg as it gives me a new outlook . Thank you for your time . Casey


    • lymphosaurusrex says:

      Hey Casey, thanks for your message and sorry for the late reply!! You should create an instagram account, even if you are not keen on social media, just to connect with other people who have lymphedema. There is a big community of people out there and it seriously helps A LOT to chat with others, discuss tricks and techniques for improving our condition and just sharing of information… like you said, the majority of doctors dont know much about this condition– WE are the experts haha 🙂 So if anything, just create an account to connect with others. You dont need to post anything yourself (like photos of whatever). Primary Lymphedema isnt hereditary, so dont worry. Its just a rare weird thing, unfortunately for us. The scan you had done was called a Lymphoscintigraphy by the way 🙂 All the best and keep in contact (my email: lymphosaurusrex@gmail.com) Sarah.


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