The leg is getting smaller!!

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On Friday I went for my 18 month post Lymph Node Transfer surgery check up. I am part of a research program here in Sydney. I will have follow-up for at least two years so that the doctors here can make decisions on future LNT surgery. There is a definite opinion that LNT surgery does not work if there is fibrous tissue present, as the new nodes cannot break this down, but can clear fluid and protect against infections. Therefore it is very important for the doctors to decided who is suited for LNT and who is best suited for Lymphatic Liposuction surgery. From this view point, at this time, at Macquarie Uni Hospital they are performing more Lymphatic Liposuction than LNT surgery. There is talk of maybe doing a LNT on these liposuction patients in the future, but so far this has not happened. The hope would be that the LNT would help post Liposuction and stop the limb swelling again. At this time after Lymphatic liposuction compression garments need to be worn 24/7 otherwise the arm or leg will swell. Lymphatic Liposuction is different to the liposuction for weight loss as care is taken to preserve  the existing lymphatics. http://www.ilfconference.org/fibro-lipo-lympho-aspiration-flla-a-lymph-vessel-sparing-procedure-lvsp-for-advanced-stages-of-lymphedema/

So back to my appointment and measurements which have reduced since my visit in March 2014. One of the measurements that is used is the L-Dex reading. http://international.l-dex.com/what-is-l-dex/ This compares the good and bad leg and shows how much fluid is present in the LE leg in comparison to the good leg. In March my reading was 7.1 then June 5.1 and now it is down to 4.5 which is within normal range. This is very exciting as there seems to be a gradual improvement each visit. The doctor also felt the area at the back of my lower thigh had softened a lot, with the help of three weeks compression bandaging, MLD and Compression Garments. I have also had no infections since the surgery 18 months ago so that is a huge plus for me. I am back in a pool without fear if infection which I am very happy about. If this surgery keeps my leg in the best state possible then that is a big improvement, as my fear was always that it could get worse and worse.

I have not been writing so many updates on my own progress as there has been little to say!!! It is a slow and steady reduction which takes lots of patience!!  Will I ever not wear compression?? Only time will tell… Next appointment will be March 2015, my two-year anniversary. I will be having an MRI and Ultrasound done then but I declined another Lymphasyntagraph!! No more injections between toes needed!!

If anyone else has an update to share then send this news via email to helenbrd@bigpond.net.au and I will create a post… As always sharing helps everyone… Helen

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29 thoughts on “The leg is getting smaller!!

  1. Wonderful to read the latest update Helen, the slow but constant progress is what one wishes for in all healing processes, and this is exactly what you give in your blog! Looking at the timeline from back 18months ago until today there has been so many doubts, pains, but also joys, progresses and hopes. With the intermingling of facts, research, and other Lymphies’ stories I thoroughly enjoy getting your lymphnode updates (and can every now and then talk intelligently to other people about lymphodemea and node transplants – something I knew nothing about before the blog).
    Lots of love from us in Lapland, Johan & Sri

  2. Very good news, Helen, and thank you for continuing to be an inspiration to us all! My leg, too, has been going down in size. My therapist just measured it again which was about 6 months post LNT, and she is very pleased that each time she measures it is smaller! She points out that my lower leg now has more definition. Soon all we lymphies can dance with New York’s Rockettes🙂 xoxo

  3. I’m glad to hear the follow up was such a positive experience. That’s great news about the steady reduction and no infections. Good outcome! Keeps me feeling hopeful too!

  4. Helen: thrilled to hear about your positive progress! You are an inspiration! This gives me optimism as I get ready for my LNT! I have some fibrosis in my lower arm and so it will be interesting how my procedure affects (or not) that area. I am already practicing patience with the healing process as I’ve been very patient getting myself to this point of the actual surgery date! As always thank you for your blog and posts!
    I will stay in touch.
    Deb

    • Og the day will be here very soon!! The area of fibrosis I had is much softer and giving it the additional treatment helps plus I am going twice a week to a hydro therapy pool. I am happy with how my leg looks and feels. Will be thinking of you on the 7th and wishing you well xx

  5. Helen, muito provavelmente farei a lipoaspiração ao final de novembro. Tenho uma dúvida, como ficou sua perna logo após a lipo? Inchou mais? Fico preocupada, mas vou em frente. Feliz por você estar alcançando o objetivo que é de todas nós. Abraços.

    • Translation
      Helen, probably will liposuction the end of November. I have a question, how has your leg soon after lipo? Swelled more? I worry, but go ahead. Glad you’re reaching goal is that all nodes. Hugs.

      I did not have liposuction but the lymph node transfer.. After surgery my leg was very swollen from the proceedure.. I believe with lipo the leg swells but still looks smaller due to treatment.. In both cases the post surgical swelling reduces to give the end result… After any surgery there is post surgical swelling.. Good luck to you for your surgery and let us know how you go .. Helen

  6. Helen, its really comforting to read you have been through for i am too has lymphadema for more than 15 yrs. Apparently lymph nodes from my pelvic was remove through an operation while i am young. I only found out that i have it through cellulitise. I am going to have LNT in 3 days. I was put to see physio for bandage on my leg and ample bed rest. Size has reduced quite a bit. Doc has told me he would like to explore lipo and LVA together during the ops. I am in fact quite worry of any post ops issue with lipo since the physio told me i dont have fibrosis or at least minimum. I really hope my LNT will be as successful as yours.

    Thomas

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