Two years after Lymph Node Transfer in New York

One of the reasons I started this blog was to have more first hand information from the patients themselves regarding this cutting edge surgery for Lymphoedema. Jennifer had her surgery in New York two years ago so I am very excited to hear of her progress. Her Lymph Node Transfer was overseen by Dr Corinne Becker who pioneered this surgery many years ago in Paris. Although Dr Becker has performed this surgery many times it is very difficult to find articles and results of the patients after a few years. Jennifer is happy to share her ongoing journey and I hope to be able to keep you updated on her progress, thank you so much for allowing me to share.image

“I have had lymphedema for over 10 years, it manifested in my leg. It blew up! I had C.D.T. and have been wearing compression and night compression ever since. The lymphedema was somewhat ‘under control’ and I had done everything in my power to keep it so, but it progressed regardless. I had been looking for more therapy, ie surgery in hopes of reversing the problem, or at the very least lessen the problem. This led me to Dr. Corinne Becker, the French surgeon who pioneered the procedure. She is working with a group of surgeons in New York, Drs. J. Levine and Julie Vasile, to form a NYC lymphedema center, and I was a good candidate for surgery. I am part of a study along with many others, though they have more ‘arm’ patients than ‘leg’ patients.

I had the surgery 2 years ago in May. They harvested 3 lymph nodes from my left thorax area (right below the arm pit, but not the axilla) and transferred them to my right groin. I was in and out within 24 hours (kind of pushed out a little early due to insurance requirements) and sent home. I had very little pain, initially under my arm, felt very weak for a week but I recovered very quickly. I have no problems where the nodes were taken from. Two years later  I have made about a 20% progress. The biggest difference is my foot, it is no longer swollen like it used to be, and the shape of my ankle is beginning to show. The texture is different, the fluid is very movable and a mushy texture. My lymphedema therapist thinks there have been changes, most remarkably the foot. She says that the first stages are the softening of the tissue. There is no fibrosis feeling anymore, and the feeling of fatigue and achenes have all but disappeared. I can also do a lot more, I am very active, physically, and I now bike ride, take long walks and swim without too much problem. I live in a cool climate for 9 months of the year which helps a lot. Summers are a challenge for sure.

Last year I had a Lymph MRI which showed the lymph node transplant and the very beginning of lymph vessels growing. I have had an MRI done last month but I am waiting to hear from my doctor on the results. I am scheduled to see Dr. Becker and my New York Dr. in the next few weeks. I would be happy to update you on what they have to say. There is talk of doing a second lymph node transfer as well as some lymph liposuction to remove the excess fat that has accumulated as a result of the lymphedema. My doctor in New York is very conservative and is not really in favor of it. I would like to further discuss it with Dr. Becker. This of course scares me to death. I don’t want to upset the apple cart, obviously…” Jennifer.

A quick update on my own progress is that today when I went to the physio my L-Dex reading has gone down to 11.8, if you remember at my first appointment a month ago it was 34.(Normal range is -10 to 10) This is a huge improvement though I am not sure at this stage if it is due to the MLD, the Ready Wraps or maybe the transferred Lymph nodes are working a little!!! Only time will tell but in the mean time I am happy to share others progress. Please contact me via a Comment and I will get in touch with you if you would like to share your story. Every time we share our experience we help others in the future… Thanks Helen

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Photo Helensamia

16 thoughts on “Two years after Lymph Node Transfer in New York

  1. I am so happy to have found your blog Helen, to hear your story and the others…thank you very much for your efforts and sharing. I have had right arm lymphedema for 10 years and I am also seriously considering the node transfer…blessings and continued positive progress to you and the others …deb

    • It would be a very positive step for you to look into as there is a great deal of experience with the arm surgery… I have heard very good reports.. On both the transfers and the liposuction… Both are gradually becoming more available.. Helen

  2. Hi, I feel very sorry for anyone who has this affliction. My condition manifested itself back in 1996. It started in my left leg and now it’s in my right leg. All because of blood clots. My hope is that this procedure is improved over the next few years and will becaome standard practice. Thanks much for the info. JG

  3. Hi I am 29 yrs old & suffered with lymphedema in my feet for 18 yrs. I searched relentlessly for cure. I have been reading about this.

    • Hi Nikki a I hope you find some useful information here but of course it does not replace speaking to a specialist Dr about the possibilities… Although new there are at least things happening and new research.. Helen

  4. Pingback: News from Jennifer … March 2014 | My Lymph Node Transplant

  5. I have lymphedema in the right leg. I had the lipo in Nov with good results, which restored the leg to near normal size in six months. The surgeon suggests I need a lymph node transfer to shed the stockings and continue to improve. The insurance company does not want to pay for the surgery, insisting it’s experimental. How do you make progress in this area? It seems others are able to have surgeries? NN

    • This seems to be an issue that some insurance companies call it experimental but others are ok… There is no logic or any order to this and has been a problem for many..i am glad that the liposuction has worked well for you… Many of us who have had the LNT to the leg are still wearing compression… Even though the legs are much better they still need compression to keep them that way… Those having the arms done seem to have more success with shedding the garments… I think mostly because the limb is smaller… The lady from NY has had a second LNT to her leg … So now groin and lower leg so will be interesting to see if at some stage she no longer needs garments… Hopefully at some stage the health funds will see this surgery as normal and nit experimental..

      • The surgeon’s made it clear that compression won’t be completely eliminated with VLNT to leg. Hope is that it will be reduced in intensity and duration (it would be nice to shed the stocking for a couple of hours periodically). I’m currently in a double layer, with a class 2 over class 3. Wrestled more today with insurance company. Would also be interested in your reply to Phil re: insurance.

        • Yes i think that to need less compression is the best outcome… I find that my leg just remains better during the day… No mad extra swelling by the evening … I will email you re the insurance.. Helen

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