Four year on….

imageToday is world Lymphedema day….March 6th… four years ago I started this blog to write about my Lymph node transfer surgery, as I could find nothing from a patients point of view. Four years later there are Facebook groups, websites and people on Instagram sharing there stories of surgery to help lymphedema. It is no longer seen as experimental and I believe there are improvements in results all the time. Lately some surgeons are using various combination of Lymph node transfer, (LNT) lymphatic liposuction, Suction assisted protein lipectomy (SAPL) and Lymphatic vascular anastomosis (LVA)… we are still waiting to see long-term results of this combination but it is exciting news.

I am still waiting for someone to be able to throw away their compression after surgery but for sure it helps the limb. In my case no more infections, my leg remains soft and responds very well to compression plus I have days with no compression and it stays ok… Due to other health issues I was unable to have more surgery plus due to these health issues I am now a paraplegic and use a wheelchair, this is not helpful when you have lymphedema. I feel sure that if I was still able to walk, use a pool and exercise my results from surgery would be even better.

We are also seeing more research into various other treatments for Lymphedema such as medications and artificial lymph vessels. We need as much research as possible so that we can see advances in a cure for Lymphedema. Lets hope that in the next four years we can see this happen…We need a cure for Lymphedema ….

Although I do not post very often on this site anymore it is always monitored and questions answered.. I love to share people’s stories so we may help each other…


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8 thoughts on “Four year on….

  1. Hi Helen… I think about you often as you were … your blog was the first place I found yo help me find a doctor to give me my LNT. Thank you so much for your kindness and dedication towards helping others. You are a beautiful soul.

  2. Hi Helen
    As with Debra’s comment your blog was the first blog I found after my teenage daughter was diagnosed with Lymphadema. It was such a learning curve and your blog was so helpful in those early days. Thank you so much for taking the time to create such a fantastic resource for people with Lymphadema
    Jennifer M

  3. Dear Helen
    Know that you have helped many with your blog. I am among them.
    Thank you. You are an angel on earth.
    That is wonderful to hear … thank you

  4. Hi, Bit off topic, but I came here via a Fantasy Football you’d posted on. I’m writing a book about FF for Penguin and am very keen to hear from women who play the game – your post on FPL Battle of the Sexes led me here.
    I’d really appreciate it if you’d get back to me to discuss your thoughts on the game,or even just to let me know you’re not interested/don’t play it anymore.
    Best of luck with the lymphoedema battle – you’ve clearly helped a lot of people with the blog.

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