Surgery for LE - surgeons are getting great results!

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HappyTrisha
HappyTrisha Member Posts: 614
edited February 2017 in Lymphedema

I haven't posted here in a very long time but I have corresponded with others here who have had surgery and I definitely try to keep up with the latest. There are new things being tried and lots of positive results. Not everyone may be a candidate for surgery and not everyone might want to go through it. But if you are someone who is interested, definitely educate yourself about what's out there. First of all go to this thread: https://community.breastcancer.org/forum/64/topics/818062?page=1#idx_321. There you will find very encouraging information and pictures from women who have had surgery for LE. There are some highly-recommended doctors performing this surgery, among them Dr. Corradino Campisi in Italy, Dr. Marga Massey in South Carolina; Dr. Jay Granzow in California (really a heavy hitter and cutting edge); Dr. Peter Neligan in Washington state; Dr. Roman Skoracki in Ohio; Dr. David Chang in Chicago; Dr. Wei Chen in Iowa; Dr. Mark Smith in NY. These are the ones with whom I am most familiar. There are others I am sure. Dr. Mark Smith is the doctor who, along with Dr. Joseph Dayan, developed the procedure called Reverse Lymphatic Mapping - imaging which helps the doctor to determine which nodes are the safest to be transplanted so that LE doesn't occur in the part of the body where the nodes are removed.

If you are interested in seeing whether surgery is an option for you, Google will be your best friend. I and others have corresponded with/visited with some of these doctors and heard first-hand the exciting things that are being done and the successes they are having. You too can correspond with them. I find they are very good about responding. I will definitely have surgery, and hopefully soon. Mine has been a process of both discovering the surgery that is best for my particular situation and wanting to stay as close to home as possible. I started looking into this seriously in 2012, so I have certainly done my homework! I am far from an expert on the topic but if I can be of any help at all, feel free to message me.

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  • SusanRachel
    SusanRachel Member Posts: 68
    edited September 2016

    Happy to hear from someone else who chose this route. I had my lymph node transfer last Wednesday. I feel pretty good, all things considered. My doc is Dr Suhail Mithani at Duke. So far, I have been impressed. I was not a candidate for the bypass because I have zero superficial lymphatic flow.

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  • HappyTrisha
    HappyTrisha Member Posts: 614
    edited September 2016

    I already had lymphocintrigraphy and the next thing I will have is the spy test. That will determine whether or not I am a good candidate for the bypass. Really would prefer that to node transfer because doctor thinks I have some lipadema in the upper thigh so not sure transfer from there is a great idea. However, Dejaboo visited with Dr. Chen in Iowa and he told her that he has used nodes from the foot with very good results! I'm so happy to see that so many doctors are now going with surgery for LE. Quite a few people on this forum have had LE surgery. I think you can read about and see results in the thread I linked to. I am so thankful that this kind of research is being done because it gives us hope to be able to escape the prison of LE.

    And there are a ton of people who have have gone the surgery route also, away from this forum. I like reading about their journeys by Googling on the internet.

    Please keep me posted on your progress.

    :)

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  • Help3
    Help3 Member Posts: 43
    edited February 2017

    I'm suffering such terrible left hand and arm lymphedema after bilateral mastectomy and left axillary node dissection. Physical therapy and wrapping hasn't helped. I'm seeing dr Massey Saturday but also am now interested in seeing Dr.Mithani.

    I've not done any reconstruction yet.

    Any advice?

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  • SusanRachel
    SusanRachel Member Posts: 68
    edited February 2017

    If you are planning to do reconstruction, it is possible that both can be done at the same time. You would need to be at a medical center that does both. I have been pleased with Dr Mithani so far, but have also heard good things about Dr Massey, so you are fine with either choice.

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  • Help3
    Help3 Member Posts: 43
    edited February 2017

    thanks so much!

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