Help needed????

imageA lady in Australia is looking into going to Paris to have LNT with Dr Becker. She has asked me if I could give a shout out to anyone else who may have done this, or from the US or other countries. How long did they stay there before flying home? Where did they stay? What was the protocol like post surgery? It is a good 24 hours of flying to get back to Australia after and what could the impact of this be on the newly placed nodes? If anyone could help, please leave a comment and share your experience… Or I can email you back from a comment notification…. Thanks in advance..

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34 thoughts on “Help needed????

    • Hi Helen, I keep trying to post a response but my post keeps disappearing–Maybe the system did not recognize me since I had not logged in since September. Anyway, I had a LNT in June 2015-{ my LE started in 2012, 6 years after having a stage 1 cancer in my uterus in 2006) and would love to help anyone who needs questions answered. I had my LNT with Dr. Chang in Chicago in June. It is a VERY long journey and not a second of the day goes by that my left leg is not on my mind. I continue wearing the Elvarex one legged panty with the 30-40 mm of hg compression. I sleep with the quilted compression garment with the sleeve that goes over the top of the quilted garment. My surgery was almost 8 months ago and I have not gone back for a follow-up visit yet. It doesn’t seem necessary for me to fly from Connecticut to Chicago in order to have Dr. Chang measure my left leg—I will go back to Dr. Chang maybe next month—I remember asking Dr. Chang about the chance of stem cells being used in the treatment of LE but he said there was not enough research that had been done for stem cells to be placed in the groin. OH well—I guess we just have to wait….and I have to become more patient …let’s all keep the faith…I will be submitting my story soon—it takes a lot of emotional strength to retell this long and painful journey–I am so very greatful for this incredible blog–in my darkest hour, this blog site and all of the wonderful inspiring people helped me thru the LE despair….We are not defined by our lymphedema; that is something we do to ourselves- we, as human beings, are defined by who we are as people. However, the LE is ever present and every step I take reminds me of the restrictive, constrictive, thick flat knit garment against my left leg. I long to feel the fabric of my clothes against my skin—I suppose time will tell and I have to learn more patience……Liz

      • Oh Liz it is wonderful to hear from you as I often wonder how you are doing and Others have asked me too but I thought when you are ready you would make contact… I really think it was not till about 1 year that I Started to feel a difference in my leg …the feeling that it was softer.. so much patients is needed.. Do you feel there is any change??? Yes the stem cell work is still a work in progress… I think the problem lies in being able to turn the cells off once they have done the work they are intended for …especially in those of us who have had cancer… This is like everything else for LE very new…but I have to say more people are having the various types of surgery so time will tell what really helps.. Yes those thick stockings are not the best.. I still wear compression most days but I am able to wear a thinner circle knit stocking of the shelf… Still 30-40mg but far less restrictive. In the winter i can get them in black and wear a pair so looks quite good!!!! I look forward to being able to share your story… Yes it brings out a lot of emotions to put it all together but i find writing very healing in that it can help others … Look forward to hearing from you again ..helen x

        • Helen, SOOOOOO good to be back on board with my LE favorite PEEPS—–great hearing from you–it is amazing to hear that so many people are on board with the LNT as opposed to 3 yrs ago when I first started logging into this site. Now, it many more people are having the procedure, or at least inquiring about it —so happy to her that—–we are a team—truly a team—the vascular surgeon here in CT has patients calling me asking me about the procedure-people are coming out of the woodwork asking the questions and looking for answers……..so glad you responded to my post—–I look forward to many, many, more back and forth responses. Liz

          • Helen, Yes, the jobst compression 30-40 mm of hg are OK for occasional wear, but I find that they start to “band” around my ankle after I have had them on a while. Oh well–luckily I live in “scrub pants” and all is hidden–I have become a master in disguise–I wish that wasn’t necessary but you must keep believing and having faith even though at times my faith is wearing thin.Liz

            • Yes, indeed–I feel “connected” once again—my world felt like something was missing for the 3 months I wasn’t logging into this site–now I feel more complete—-it may sound corny but it’s true-we are “family”-Liz

      • Hi
        I have shared my story previously but just a quick overview
        Dr Corrine Becker is fantastic caring and passionate about helping people with Lymphoedema especially after breast cancer
        And removal of axilla lymp nodes. Her English is pretty good I just had to listen hard .
        ALNT operation Sept 23rd 2014
        Outcome my right arm has decreased in size not back to being normal by any means but has halted the progression I still wear compression sleeves and do some occassional night time complex bandaging with either Mobiderm system or regular system which were having NO effect before surgery
        I would recommend
        A longer stay than mine for post op followup appts say 2weeks before travelling around Europe or returning home by plane no problems for flying re lymph nodes
        However I did have a major infection occur on my return to Australia probably because of lack of post operative care followup by a Dr who was familiar with the op I lost a flap through fat necrosis and it was a lengthy messy messy recovery period
        SO .I dont know what loss of lymph nodes occurred if any my ignorance and lack of medical English surgery notes left me without a reference also I developed a seroma after surgery with the lower abdominal flaps (?) removal taken Probably would have had it treated in Paris if my recovery post op was longer and it was picked up earlier my ignorance too on not getting it diagnosed and attended to in Australia earlier than this year as it has developed into a hard encased fluid filled capsule hard to pick up initially as I and was even more very very overweight

        Dr Corrine recommended LOSS ING WEIGHT as being one of the better things I could do for my Lymphoedema management.I Have thank goodness and continue I have a long way to go!!
        Now back to info re operation
        I had this op nearly 3 years living with and treating through lympdrainage by a wonderful physio at Gateshead Breast Cancer Clinic and trained massage therapist in Lorn who together could not stop the progression I still see and utilise their services and their support was integral to my undertaking of the ALNT operation
        Followup complex bandaging is part of essential post operative care hopefully Dr Becker has formalised her physio contacts for her overseas patients by now I was making appts myself ( by the way you do have to be prepared to be responsible for alot of your post operative care NO molly codling for patients and health care in France you have to step up and communication is challenging as belive it or not English is not their language of choice How dare they😄😄 )
        I digress
        My success yes it has been a success no further progression no pain and heaviness reduced girth measurements and a lower but still highly abnormal LDex reading pre op 80 now in 50 ( normal _10 to 10) able to use arm normally for life and in my work as a teacher
        RECOMMEND getting a Dr here in Australia that has some support and knowledge of ALNT good luck with that though Professor Boyages at Macquarie University cancer Hospital clinic has been involved with me and his team is working in this area when I did it they had only done 10 procedures but nothing like Dr Corrines maybe they might be open to working in liason with her somehow any way You Need someone here to keep am eye on you post op my local GPS did their best but they aren’t surgeons either.
        I was fortumate to have involved a plastic surgeon / surgeon /specialist here in Newcastle to check on the breast from a reconstruction point as he had no knowledge on ANLT very helpful when infection and fat necrosis occurred and needed hospial stay and at home care community nurses to attend

        • Thanks Barbara I will pass this on to Michelle to help her in her decision making … I am glad that you have seen some improvements and hopefully over time you will see more.. Helen

  1. Hello Hellen,

    I had my LNT 14months back and due to my travel schedule i have to travel very frequently which my doc in Sg advise against. Same for my physio therapist . And tge swelling of course went up and is now bigger in size. Thank god my lymph nodes is surviving as shown in the scan in Dec.

    Nevertheless, i hope i have not travel this much. I feel her doc is the best person to advise about the long flight back to Australia.

    Thanks Thomas

    Sent from Samsung Mobile

    • Thanks Thomas … Sorry to hear that all the travel has caused your leg to worsen… Hopefully with less flying it will improve.. Can you wear stronger compression when you fly or use wraps at night to bring it down .. My dr allowed me to fly 6 weeks after surgery but that was only a 4 hour flight and a one off… As you say only the doctor can advise what is best is post surgery.. Glad to hear the nodes are still all ok and we hope growing …

  2. On January 27, 2015. Over year ago. I had a LMT with
    Dr Becker in France. I have had secondary Lymphodema in my right leg for over 15 years
    My results have been slow as expected. However My leg is improving
    I am happy to share my experience, suggest places to stay etc.
    please email me at the below address

  3. Hi Helen, Depending on what she will have done Dr. Becker may want her to stay close for a few days to make sure everything is healing. I stayed in the hospital 5 days my first surgery and 3 days the second one. We she be following up with a doctor when she returns home?
    I wish her all the best!!

    • Thanks Maureen …she is concerned about how long she needs to stay in Paris before the long haul flight back to Australia post surgery… She does not want to damage the newly planted nodes.. Yes I think a few days in hospital is a good idea… She would get follow up in Australia from Mt wilga LE clinic .. How are you?? I hope better than your last email … Life certainly can bring some ups and downs… Helen xx

  4. Hi–I did not fly out of the country but I did go to Chicago from Texas. The doctor required one day prior to the surgery and 4 dayys hospital and 2 additional days at the hotel -for a final checkup. For the plane trip I contacted TSA cares to get me through security –with all the drain tubes and wrapping issues. I did get first class–and paid for it–so I could get on early and off early. Hope this helps.

    • Kim, I too, flew to Chicago from Connecticut for the LNT with Dr. D. Chang. My surgery was in June 2015–I stayed in hospital from Friday morning (day of surgery) till Monday morning and was discharged on Monday morning with a drain in my neck. My husband and I then took a long slow leisurely walk into Chicago and I never felt better…..We flew back to Connecticut on Thursday of that same week–Dr. Chang saw me for the last time that same day as a follow up visit before we flew back to CT.Everything went well and now it is 8 months since the surgery—-I think there is a reduction in my left thigh-my ankle and calf have not really reduced much–Dr. Chang said that LNT was good –Dr. Chang also did a lymphovenous bypass in my left calf–he was able to find 1 big vessel to anastomose to a smaller vessel to promote drainage from the calf and foot. That is what seems to be taking a lot more time.
      I was really diligent about posting my progress for a couple of months post op so that I could give everyone information about the experience- around September I got into a different department in the hospital I work in and I just couldn’t do the amt of posting I had done in the past. Anyway, now I’m back and can answer any questions anyone may have. Liz

      • Hi Liz .. Can a create your comments into a post with links to your previous articles so that everyone will see them?? I can do it in the next couple of days … The lady in Australia looking for help has had a lot if responses which is great… I Found her a Dr in Melbourne who us doing the surgery which is just a short flight from her home … She is going to see him and if she feels ok will have the surgery with him … The 24 hours of flying to get home from Europe plus the cost makes it a difficult decision .. Anyway we will see how it goes after her consultation in Melbourne … Thanks for offering to answer questions …it really does help especially as now more Drs are doing this surgery… Helen

          • You cant do it from your end you can only add comments … I have learned a lot computer wise in the past three years!!! When you write you big story send it to me as an email and then I create a post. Its what I love to do🙂

        • ThanK God for more docs doing this procedure—-it warms my heart and gives hope to all folks with LE—I still can not believe I had the nerve to do this surgery—-

  5. I had a lymph node transplant at the University of Chicago. Dr. David Chang was the surgeon. He also completed a bypass surgery at the same time in which he bypasses clogged lymph nodes all the way up the arm. My surgery was very successful. I used to have severe infections every 3 months. I have had only one infection, since my surgery which was 2 years ago. The recovery time can vary. I had radiated skin under my arm which made it harder for the incision area to heal. I highly recommend the University of Chicago. Dr. Chang has traveled all over the world teaching other surgeons about this procedure. He is very skilled.

    • I agree Kathy. I too had surgery with Dr. Chang in June 2015. the LE was in my left leg- He did a LNT and a lymphaticovenous bypass in my left leg—I think I have had some reduction in the thigh-In the ankle and calf, I think it is a negligible reduction. I have not gone back to Dr. Chang for a follow-up visit since the surgery so I know I am due to be seen-I’m just not sure what he does on a follow up visit so I want to make sure there is something to show him. Yes I was happy Dr. Chang is a US doc-certified in US–it is only a 1 and 1/2 hr flight out of CT to Chicago. I respect and admire Dr. Chang.Liz

  6. Hi..yes I had a LNT from Dr. Becker… 2 1/2 years ago. I have had improvement, but by no means is my leg normal. I still wrap as much as I can and pump daily with Flexitouch and workout 3x a week on cross trainer. She will stay near her office or hospital for up to 6 days post op. It’s ok to fly. I saw her in NYC and flew home to San Francisco. You will have surgery swelling. You will have to ask her about the flying issue. You may want to rent a house for a month or so in France, if you have time… that’s what I would do.

    Please email me your email…so I can go into detail about the procedure. Lorimurph1988@yahoo.com. I have a lot to share…

  7. Hello helen, i had the LNT with Dr Beker in May of 2015. My leg was abit hard, now its softer and gained some shape, very slow improvment. I stayed at the hospital for two day. The doctor asked to stay in paris for at least one weak for phisiotherapy and to make sure thing are ok. Then flow back on a five hour flight. The first day after surgery was hard, most of the pain was in the doner area, in my case, under the arm. After that i was mobile and walking around.
    From what i saw from the doctor traviling back was not an issue.
    Good luck ,

    The surgery was about 3 hours, the

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