A question for you all … Please help…

Ann has asked me to share this question so more of the people who follow this blog can answer her questions… It would be great if you would write any answers for Ann as a comment at the end of this post.. If you are willing to email her then please email me your details to helenbrd@bigpond.net.au and I can pass these on to her.. It is a huge decision to go ahead with surgery for Lymphedema and it is very difficult to get answers when it is so new… However everyones experience can only help each other so i look forward to your responses… Thank you so much … Helen

“Is there anyone on this blog with primary LE considering surgery? Anyone familiar with Corinne Becker’s track record? I emailed her and she’s emailed back-I’m impressed. I hear very good things about Chang but struggle with his deeming MRL not of great value. Since my situation is congenital, I can logically deduce that MRL would be a valuable tool when considering surgery on a patient, to know as much as you can about them before operating. However, I think he is just so confident in his procedures he feels it’s just another expensive test. I think he feels the solution/surgery/procedure is the same no matter what the imaging shows.
Dr. Becker, on the other hand, sees significant value in MRL. She distinguishes between hypertrophy and hypotrophy of the lymphatic vessels, and says that will dictate which procedure is used. That in cases of severe hypotrophy (not enough vessels), LVB can actually do harm to the remaining vessels. She uses LNT for hypotrophy and LVB for hypertrophy (too many vessels/tangled mess) and sometimes recommends LNT as well for that. Is anyone familiar with these two categories? Anyone had surgery by either of these surgeons? Is there a way to reach a larger audience on this blog with this question?” Ann

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29 thoughts on “A question for you all … Please help…

  1. Dear Ann, I have secondary LE from a hysterectomy done in 2006–My LE surfaced 6 yrs later in my left leg. I can not tell you very much about Corrine Becker because I do not know but you sound like you have done and are doing your homework. Kudos to you! We are all learning and helping each other thru shared knowledge.
    I am having LNT and LVB on June 19 with Dr. Chang at University of Chicago Medical Center. I will enter my progress as I go along in order to help others make a decision in their care. I hope it helps you make a decision as to how to address your concerns and with which provider. I know and understand our circumstances are different but similar in many ways. Pray for me as I will do for you. God is standing next to us–We are pioneers and we are opening the doors for others. Love, Liz

  2. What is MRL?
    10 years ago, Dr Shim in South Korea( stem cell lymphodema surgeon) invited Dr Becker over to show him how to do LNT. His success rate was nil. He felt that just a few transplanted nodes would not stem the tide of primary lymphodema- its just too much fluid in one go- and they would not survive. However, Im led to believe that microsurgery has significantly moved on and many more of the smaller vessels can now be joined together. I am also aware that Dr Chang was producing a report / clinical trial doc- ask him for a copy and levels of success?
    There is also a new surgeon in the UK looking at this- based in Hull, England. His name is Dr Karri. A small regional airport called humberside takes flights to and from amsterdam, so international travel is easy from there. Worth a google?
    But How can success be measured? Smaller limbs? No compression?( The latter for me….) not even stem cells have got there yet. No surgeon is currently achieving success measured by no more compression required and a good compression therapy practitioner can get those limbs down, without surgery. All water assisted surgery/ lymph saving surgery causes some damage- its unavoidable- but depends on what your desired level of satisfaction is to determine success for the individual. Good luck with whatever path you decide to take!

    • MRL is a type of MRI that is done in New York and Paris that maps the entire lymphatic system.. It is also used to show the growth of the new vessels after a LNT.. This growth can take many years but it does happen.. As I have said before it is very difficult to find accurate results especially if a total cure is what the patient is looking for… Improvement on various levels is what one can hope for dependent on the condition of the limb pre surgery.. Smaller, softer and no infections is a big improvement plus a better response to any MLD etc… In years to come we hope that the results of surgery will become better and better as the surgeons become more skilled, over the last few years this has already been the case.. Dr Chang has improved his procedures over the last few years as have other surgeons.. The more data that is collected on results the better…

  3. Dr. Becker is amazing!!! She did all three of my surgeries back in 2012 in NYC. I have LE secondary Lymphedema in my right leg due to Stage 3 Melanoma. I was very nervous and had a ton of questions also. Dr. Becker was wonderful the first time I met her. My other surgeon was Dr. Vasile not Dr. Chang so Im not sure about him. I trust Dr. Becker and she has made my life 100x better. My leg was completely deformed and now I can walk,move and do normal everyday things without pain and I owe it all to Dr. Becker! Good Luck with everything and keep us posted!! You can also email me if you would like!! Take care, Maureen

    • Thanks Maureen… Good to hear from you and that you are going well …. Continue to move on with your life …. it is so good to hear that the surgery helped you so much …. Helen

    • Maureen, that is wonderful—I am so happy to hear your results have given you back your life. I can “feel” your smile and your joy when you talk about it. I also researched Dr. Becker while I was researching Dr. Chang which was about a year or ago-I think at that time, Dr. Becker had not renewed her license or some weird story like that-I may be mistaken but something had transpired. In any case, I’m very glad it all worked out for you.
      My surgery is this Friday with Dr. Chang and I’m excited/a little nervous/but totally committed-you all have inspired me. In addition, we have all educated one another by the sharing of information, our trials, tribulations, our hopes, fears and tears. This is an amazing blog site. Thank you all-please pray for me as I will continue to do for you all.

  4. Hey Ann

    I saw you question on the other forum too…
    I have primary le and i was / am considering lnt too. For the moment i am still waiting because some products are in the pipeline to assist the lnt and to have even better results. I had a negative limfescintography of the arms showing hypoplasia too. Allthough the doctor did not see this as a problem because they do not take nodes from the arm or axilla, i am holding back for this reason. I want to take this risk when i am sure there will be good results but unfortunately results are always very personal.

    It is not easy to find testemonies, there for this is a good site. I have send many emails to people in France. The 40% rate that does not need garment after surgery is exagerated i think because non of the people i met could skip garments ( arm do gives better results). Some ha no improvements and two got it worse… Although thi is stated not to happen.
    So thankfully here testemonies are gathered.
    I had Mri, limfescintograohy of body and blue dye injections. I think the combination of these test give a good idea of what is the problem ( my case general hypoplasia) and how to fit surgery to my needs.
    Without mri a doctor wanted to place the nodes in the knee area. Then i ha mri which showed that i still have nodes in the knee… The blokkage is just really distal ( so it stops on the limfescintography showing that i had nothing in the whole leg!)… So a lnt to knee woukd not have helped because too distal from the problem… After mri they said better to put nodes is lower calf…
    Please let us know your progress!
    Take care!

    • Thanks for your answer for Ann… Primary is a different story to secondary and one must be careful to look into the whole system to check other weak areas .. Helen

  5. Kharimata, Thanks for your post. I agree with your assessment…results vary but seems people with lymphedema are willing to settle for small improvements over nothing at this point. As will all medicine and surgeries, advances will continue and hopefully in the next decade we may see more quantifiable and consistent results. As far as the bio-bridge and growth factors to help the transplants take…I’ve read with cancer patients that may not be an option as it could promote the possibility of spreading cancer cells. Since the majority of the population of lymphedema sufferers is secondary, not primary, it may be a while before the growth factor is really put to the test, esp. if it’s mainly used in congenital cases??? Just something to consider. If a patient is completely cancer free, I guess they would go ahead with it? Not sure, need to research this. But I agree with you that at this point outcome is uncertain which is why it is such a difficult decision to get the elective surgery. Thank you very much for your info on the MRL and what it revealed for you…makes sense that it would help determine the best location for node placement-another thing I plan to ask Chang.

    Upreston-Regarding what you wrote: “All water assisted surgery/ lymph saving surgery causes some damage- its unavoidable- but depends on what your desired level of satisfaction is to determine success for the individual.” Can you expand on that? How is this a water assisted surgery? Is this something you read?

    • Just from me .. The water assisted liposuction is for Lipodema and not Lymphedema so not sure where Val was going with this as you have Lymphedema.. They have been doing it for many years in Germany for Lipodema…. The liposuction for lymphedema is different and started by Dr Brorson in Sweden twenty years ago.. He does have on going results which seem good but compressupion must be worn 24/7 after … He trained the drs in Sydney that we have doing this at Macquarie Uni hospital … dr Lam.. http://lymphaticnetwork.org/ask-experts/e/hakan-brorson …Helen

  6. Hi Helen (and Ann)
    I have just discovered this blog, and I’m enjoying reading all of the posts so far! I’m 23 and have Lymphedema in my left leg. I had a lymph node transfer 2 months ago and … I am already seeing huge improvements! Since the beginning of May I have lost 750 mls of volume from my leg (just another 600 mls to go!) I’m very happy that I took the risk and had a LNT!
    Emily x

    • That is great news… Which Dr did your surgery.. It is so good to hear positive results… Are you bandaging and or wearing compression garments ??? Take care and continue to heal.. Keep us posted as to your progress.. Helen

      • Thank you for your reply! Dr Anne Dancey did my surgery, she based in the UK.
        I had a few bandaging sessions just after surgery, now I’m having an intensive 6 months of MLD which is really helping! I wear two compression stockings on my leg at the moment, I’m hoping to reduce that to a single stocking in the next few weeks. Can’t wait to hear more success stories!
        Emily x

  7. BUONGIORNO A TUTTI SONO UNA RAGAZZA ITALIANA DI 26 ANNI HO UN LINFEDEMA SECONDARIO ALLA GAMBA DESTRA.
    IN QUESTO PERIODO STO VALUTANDO L’INTERVENTO DI TRAPIANTO CON LA DOTTORESSA CORINNE BECKER.
    SONO MOLTO FELICE DI ESSERE ENTRATA IN CONTATTO CON QUESTO BLOG ..
    HO BISOGNO DI INFORMAZIONI PERCHè NON RIESCO A CAPIRE SE L’INTERVENTO PUò VALERE LA PENA OPPURE è UNA DECISIONE SBAGLIATA ED è MEGLIO ASPETTARE.
    SOGNO IL GIORNO IN CUI POTRò VIVERE SENZA CALZE COMPRESSIVE, SENZA TERRORE DI FARE GONFIARE LA MIA GAMBA O DI FARMI MALE,LIBERA DI TORNARE AD INDOSSARE TACCHI E GONNA CORTA COME TUTTE LE RAGAZZE DELLA MIA ETà, E HO SEMPRE PENSATO CHE L’INTERVENTO ERA L’UNICA STRADA PER RIUSCIRE AD OTTENERE TUTTO QUESTO.
    MA ORA QUI LEGGO CHE MOLTI NON HANNO AVUTO GRANDI MIGLIORAMENTI CHE PORTANO CMQ LE CALZE E CHE LA GAMBA NON SI è RIDOTTA..QUINDI MI VENGONO DUBBI,, GUARIRE RESTERà SOLAMENTE UN SOGNO??? IMPOSSIBILE ARRENDERSI A 26 ANNI….

    • This is a translation for others to answer. HELLO TO ALL I AM A GIRL OF 26 YEARS I HAVE AN ITALIAN LYMPHOEDEMA SECONDARY TO RIGHT LEG .
      IN THIS PERIOD STO EVALUATING THE INTERVENTION OF TRANSPLANT WITH DOCTOR CORINNE BECKER .
      I AM VERY HAPPY TO BE ENTERED INTO CONTACT WITH THIS BLOG ..
      I NEED INFORMATION WHY I CAN NOT TELL IF THE OPERATION CAN CLAIM THE PENALTY OR IS A WRONG DECISION AND BETTER WAIT .
      DREAM OF THE DAY WHEN I live without SOCKS COMPRESSION WITHOUT TERROR INFLATE TO DO MY LEG OR FARMI MALE , FREE TO RETURN TO WEAR HEELS AND SHORT SKIRT HOW ALL THE GIRLS OF MY AGE , AND I ALWAYS THOUGHT THAT WAS THE SURGERY THE ONLY WAY TO SUCCEED TO GET ALL THIS .
      BUT NOW HERE I READ THAT MANY DO NOT HAVE HAD GREAT IMPROVEMENTS CMQ WEARING SOCKS AND NOT THE LEG is RIDOTTA..QUINDI MI ARE DOUBTS ,, HEALING WILL ONLY A DREAM ??? UNABLE TO SURRENDER TO 26 YEARS ….

      I think it is not a cure yet but it does seem to help the Lymphoedema.. My leg remains soft and i have had no infections which us a great improvement … A few years are needed to see change .. Helen

  8. I live in New York and am trying to contact dr Becker do that I can have an exam for the lymphodema surgery. Can anyone direct me to her phone number or email?
    Thanks so much,
    Felecia

    • Hi Felicia.. She does not work in New York anymore as far as I know this is a link to contact details for her http://www.lymphoedemacenter.com/lymphnodes-transfer-forums/
      There are other drs in New York who do this surgery like Dr Dyan this is an article on the hospital where he works … There are now quite a few drs in the US doing this surgery you can look on the internet for others … Always check experience and training.. You will find on this blog various drs and peoples experiences with them …

      • Thanks Helen. I’ve been having a difficult time finding a doctor that does the surgery for non cancer patients. I have congenital lymphodema and would really like to have this surgery before I get too old to do it
        Can you suggest anyone?
        Thanks,
        Felecia

        • A lady has just had surgery at John Hopkins Hospital under a Dr. Justin Sachs she has primary Lymphoedema… Do you live in NY?? You could speak to Dr Dyan…there is also Dr Granzow but he is in California http://lymphedemasurgeon.com… Every patient is different so the drs do not know if you are a suitable candidate till they examine you and do tests etc… With Primary LE it is ensuring that other areas have good lymph nodes as they do not want the surgery to make things worse. Also if the limb is fibrotic the LNT will not help as it only helps in moving fluid.. Dr Granzow also specializes in Lymphatic lyposuction or the SAPL procedure.. This is more suited to those who have a limb that is fibrotic… Only a Dr can decide if you are a candidate for surgery and if so what type of surgery you need.. You may need to start by making an appointment and getting an assessment of your condition by a surgeon, he would also arrange the various tests to map the lymphatics etc.. More Drs are seeing patients with primary Le than previously but it does depend on the individual case ..

          • Yes. Live on Long Island but am willing to travel within the tri state area. I will reach out to the doctors you suggested and try to arrange a visit. Thanks for your help

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