California Lymph Node Transfer..

imageThis is a post from Cindy, who wrote this via a comment but I felt there was so much useful information it needed to be shared as a post, so everyone would see it.

“December 11th 2014 I had the lymph node transplant which was the surgery my doctor thought would be most beneficial. It was a nightmare getting insurance approval. I have lymphedema in my right leg. My case is a little unusual in that I did not have cancer (though I had a radical hysterectomy because I was thought to have cancer), so there was no chemo or radiation. Unfortunately, 7 weeks post hysterectomy I had emergency surgery for an evisceration (small bowel prolapsed). Lymphedema in both legs started shortly after. My left leg responded well to treatment but not my right leg. I First met with my Lymphedema surgeon in 2012 but at that time was not ready to try a surgical approach. I felt overwhelmed with wearing compression and still having my leg swell at the end if the day. My leg consumed my ever waking moment. I was unwillingly to do anything that could possibly increase the size of my leg. I wore a 40-50 compression and slept with a Jovi at night. The emotional impact of lymphedema for me was huge. Not the cosmetic part, I learned to accept that. It was the constant fear of doing anything to make the swelling worse.

Eventually I decided to go ahead with surgery which was not as bad as expected. Pre surgery I had a lymphascintograph to show placement of nodes. I had been so fearful that the surgery would trigger the lymphedema to become out of control again. During the surgery the doctors took nodes from the left axilla and placed them in the thigh of the right leg (inner thigh not groin). Immediately after the surgery a Physiotherapist lightly wrapped my lower leg in bandages. I did not have any swelling in my lower leg. The bandages could not go higher than my knee because there couldn’t be any direct pressure on the incision, and of course there was the drain. I did have post op swelling in my right thigh and my left torso/hip area, from the donor site. I was supposed to stay in the hospital one or two nights but I developed a hematoma at the donor site (totally unpredictable) and became anaemic because of the blood loss. I spent 5 nights in the hospital while this was treated. On leaving hospital I stayed in California, in a hotel, and rented a wheelchair. For the first two weeks I was not allowed to weight bear on my right leg. Please remember I only had the LNT done. Before I left California, the two drains were removed and I was put in a compression garment (that was loose enough in the thigh…which allowed me to put a surgical pad over the incision). I started MLD on returning home and will go into a better fitting custom garment at a later stage. On 5th January I return to work (I am nervous about being on my feet all day) and wonder how this will affect my leg post surgery. My physio has to wait until 4 weeks post surgery to perform MLD directly over the incision. My leg has no bruising, post-op swelling appears to be gone. It’s hard going out-of-state for surgery, thankfully my doctor is readily available via email or phone call which helps. My California PT and my local PT will need to stay in touch to monitor my progress. Hope this answers people’s questions. Feel free to keep questions coming. I seriously mean that, I know I had a million questions and thoughts running through my head (still do!!). It is too soon to see what type of improvement I get from the surgery. The fact that my leg didn’t blow up is a very good sign and when I left California the doctor said the node already started to vascularise. I am feeling very positive about this procedure. As I have said before, leg lymphedema and arm lymphedema are different. My PT was saying (most of the time) arm lymphedema is easier to stabilise. Gravity and leg lymphedema are constantly working against each other. I look forward to hearing from anyone else who has questions or just wants to compare symptoms they might have”…… Cindy

Thanks so much for this Cindy, gives us a really good picture of the process you have been through.. I hope you will keep us posted on your progress…,Sharing really does help others.. As you say so many questions which Cindy is happy to answer.. Please leave any questions as a comment..

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26 thoughts on “California Lymph Node Transfer..

  1. Thank you very much for this post!!!! I am scheduled for LNT surgery January 27th in France with Corrine Becker. I have secondary Lymphodema in my right leg as a result of cancer treatments. I have suffered for 14 years with it. Would you be willing to share your surgeon with me? wishing you the best results possible, and that you may live free of this awful disease.

      • I had my LNT on Jan 27 in France from Dr Corrine Becker, I was fortunate to have a dear Dr. Friend travel with me. The entire experience was amazing. She is a brilliant, caring surgeon!!!!
        I am 2 weeks post surgery.. I am in recovery and healing mode. My under arm that was the host site, where they removed my lymph nodes from to transfer to my groin is very sore and swollen, however I already see a reduction in my leg, and the Heaviness is subsiding!!! I will keep you posted and updated on my progress

        • That is fantastic news and is so good to hear… Where did you travel from to have the surgery?? So glad to hear your leg already feels different… Keep us posted on your progress.. Helen

            • Hi Helen… Wanted to update you. I am 4 Weeks out from surgery. I have been doing therapy 2x a week and have stayed in compression or wrapped at night and everyday. I will take measurements Friday on my leg. Feeling a bit down, I was very optimistic my leg would reduce more than it has,,, the build up to surgery was so involved with travel to France, etc. the reality that this illness is lifelong with constant maintancence and compression can be daunting. The pressure from family and friends expectations can be stressful, they want to hear I am “healed”. And not suffering any longer.
              The good news is that my leg feels much lighter, and it feels almost alive inside. So I am very hopeful. I’ll keep you posted. Hope you are well. Would love to hear your updates!!!!
              Best
              Paula

            • It does take a long time to see real results. The new nodes have to grow and create new vessels and that takes time. The first thing you notice us it gets softer. Yes everyone wants you to be better but there is a great deal of patience needed and it really is an emotional roller coaster too. I had huge mood swings after surgery due to the expectations!!! Things will improve xxx

            • Things will slowly get better. Stay in compression 24/7 and start getting MLD. I wear compression around the clock and receive MLD twice a week (initially I was going 3 times a week). My leg volume matches my other leg😊
              I’m suppose to start pulling back on wearing my garment. I want to wait a little longer. Try to stay positive (easy to say, not always easy to do!). My emotions are a roller coaster too. I’m excited, nervous and apprehensive.

        • Glad you are doing well. Wow, you did travel far. I’ve heard wonderful things about your doctor. Do you still have the surgical drains in? When will you go back home?

      • I had my LNT on Jan 27 in France from Dr Corrine Becker, I was fortunate to have a dear Dr. Friend travel with me. The entire experience was amazing. She is a brilliant, caring surgeon!!!!
        I am 2 weeks post surgery.. I am in recovery and healing mode. My under arm that was the host site, where they removed my lymph nodes from to transfer to my groin is very sore and swollen, however I already see a reduction in my leg, and the Heaviness is subsiding!!! I will keep you posted and updated on my progress

  2. Hey Paulamarie please let you know how you are doing. I am still very interested in having a surgery in France with Dr. Becker too. Wish you all the best. Thank you Cindy for sharing your story!

    • I had my LNT on Jan 27 in France from Dr Corrine Becker, I was fortunate to have a dear Dr. Friend travel with me. The entire experience was amazing. She is a brilliant, caring surgeon!!!!
      I am 2 weeks post surgery.. I am in recovery and healing mode. My under arm that was the host site, where they removed my lymph nodes from to transfer to my groin is very sore and swollen, however I already see a reduction in my leg, and the Heaviness is subsiding!!! I will keep you posted and updated on my progress

  3. Cindy, I live an hour outside of San Francisco. I’m wondering where in California you had your surgery. Which surgeon?

  4. What hospital did you go and who is your doctor. I have limphadima in both of my legs and is reply hard getting aroun. I’m only 36 years old and have kids. I really whant to have surgery. So i can be normal again. My limphadima started after my battle whit cancer.

  5. Pingback: Cindy.. 8 months post surgery with Dr Granzow | My Lymph Node Transplant

  6. Pingback: Latest news from Cindy.. Can I let Compression go? | My Lymph Node Transplant

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