Lymph Node Transfer… USA

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Sunshine.. Photo Helensamia

One of the reasons that I started this blog was due to the lack of information I could find from patients who had Lymph Node Transplants/ Transfers to the leg. There also seemed to be a lack of post surgical info, what I found seemed to read as if the patient had the surgery, the limb was all good straight away and they went home!!! (All references seemed to be for arms only too). I first thought to keep a diary of my progress, I then thought about a blog so others could share my journey, in the hope it would help another patient having this surgery or thinking about having it.

I launched my blog at the end of February 2013, prior to my surgery in March 2013, almost immediately a lady wrote a comment that she was due to have surgery in Philadelphia USA, she had found my blog while searching the internet for information. Like me she had Lymphoedema in her left leg due to the treatment of Uterine Cancer. She wrote “I have left leg Lymphoedema following the removal of 15 lymph nodes during a radical Hysterectomy for Uterine Cancer. I am interested to follow your journey since I am really worried about this surgery but I am also sick to death of the lymphedema, the pump, the compression hose, the deformity and the depression!” I will call this lady Sue for ease of writing and to protect her identity, though she has given me permission to share her story in the hope of helping other

Sue, as I did, first say the Lymph node transplant surgery on the television, a lady had lymph nodes removed from the groin and placed in the arm pit to relieve the Lymphoedema after breast cancer surgery. The program said she was progressing well and the surgery had been performed at the University of Pennsylvania Hospital. Sue contacted the hospital and made an appointment to see the micro surgeon who had performed the operation. After seeing the surgeon her operation was arranged for 12th April, she was to have lymph nodes removed form below the arm pit in the thorax and placed into her groin.

“A Vascularized Lymph Node Tranfer (VLNTx) is microsurgical procedure where normal lymph nodes and their associated adipose tissue is transferred to a region of the body that suffers from lymphedema as a means to i.) decrease limb size; ii.) alleviate subjective symptoms of “heaviness”, “achiness” and early fatigue; iii.) potentially reduce daily compression requirements; and iv.) slow progression of the disease.

VLNTx were initially introduced in Paris by Dr. Corinne Becker and her associated group of surgeons in 1991. Since that time, Dr. Becker reportedly has performed more than 1500 of these transfers in France, Brazil, Korea and Egypt based on the premise of lymphangiogensis; namely, “like reconstructs like”. This “French School” of lymph node transfer suggests that normal lymph nodes and perinodal fat containing essential stem cells, adipocytes, and macrophages transplanted on their native blood supply, effect a normal repair process in the direct region of prior injury (i.e. the axilla after axillary lymph node dissection and/or irradiation). Key aspects of this approach include thoughtful patient selection, a no-touch, atraumatic harvesting technique, aggressive adhesionolysis in the area of injury and meticulous microsurgical skill securing effective revascularization of the transferred flap. Dr. Becker and her associates have published limited numbers of reports outlining this technique with a focus on the upper extremity, primarily at the level of the axilla and fewer reports at the antecubital fossa.” (Ann Surg 243: 313, 2006; Breast 17: 472, 2008).

The lymphatic system, lymph vessels and lymph ...

The lymphatic system, lymph vessels and lymph nodes. Español: El sistema linfático; vasos linfáticos y nodulos o ganglios linfáticos. Русский: Лимфасистема с лимфаканалами и узлами. Polski: Układ limfatyczny (chłonny) – rozmieszczenie głównych węzłów i naczyń chlonnych. (Photo credit: Wikipedia)

Sue and I, since her initial contact, have remained in touch  so we are able to share our experience and progress. This has been a help to both of us as we understand why we would have such new surgery…..to be the pioneers of the leg surgery!! For Sue living in the USA there was to be a huge shock, a few days before her surgery she had a phone call from the surgeons office, her private health fund had refused to pay for the operation and she needed to pay $10,000 up front for the surgery to go ahead. In the USA the Lymph node transfer surgery is seen as “investigational” and not covered by health funds. Those of you in the USA who have Lymphoedema or the potential to have Lymphoedema should take a look at this website in the hope of making changes re the health coverage for Lymphoedema care.

Please click on the link below it will take you to the Lymphedema treatment Act website for more information….

<>Welcome to the Lymphedema Treatment Act website.

The Lymphedema Diagnosis and Treatment Cost Saving Act will improve coverage for the diagnosis and treatment of lymphedema from any cause. Untreated lymphedema is progressive and leads to infection, disfigurement, disability and in some cases even death. Thus, prognosis for the patient is far worse and treatment more costly when the disease is not identified and treated in the earlier stages.

WE NEED YOUR HELP! We have no paid lobbyists; our cause is entirely grassroots and patient driven. Please explore the site to learn more, then complete as many of the simple steps under the “How You Can Help” menu as you can. The single most important thing you can do is take just a couple of minutes to
Contact your members of Congress using our simple submission form.

PLEASE NOTE THAT BILLS DO NOT CARRY OVER FROM ONE CONGRESS TO THE NEXT. THE LYMPHEDEMA TREATMENT ACT IS CURRENTLY BEING PREPARED FOR REINTRODUCTION IN THE 113th CONGRESS. THE LINK IN THE “Current Status” BOX TO YOUR LEFT WILL TAKE YOU TO THE BILL FROM THE 112th CONGRESS. THE LINK WILL BE UPDATED AS SOON AS THE BILL IS REINTRODUCED.

Although this legislation relates specifically to a change in Medicare law, it would almost certainly result in all private insurance policies following suit. Specific goals of the Act are:

Comprehensive treatment coverage, according to current medical treatment standards,
for individuals with and at risk for lymphedema;
The ability to add new treatment modalities to coverage as they become available and are approved;
Preoperative measurements for cancer patients to aid in early detection and diagnosis;
To provide for lymphedema patient education in the procedures for self-treatment so as to transfer the treatment from the clinical to the home setting;
To enable patient self-treatment plan adherence by providing necessary medical supplies for use at home, as prescribed for each patient (compression garments, compression bandages, other compression devices, pneumatic compression pumps, etc);
Reduction in total healthcare costs through avoidance of periodic infections, pain and disabilities resulting from this medical condition.

Sue made the decision to go ahead and pay for her surgery, she felt she had come this far and could now not turn back. Five days after her surgery I had the much awaited email to hear how she was going. Sue was back at home after a two day stay in hospital. She has a community nurse coming everyday to change the dressings and to check her drains. She has an incision on her left side about three inches down from the arm pit, this is where the nodes were harvested, the transfer site is in the top of her thigh on the left leg, rather than the groin. She has a drain in each of these sites and hopefully by now these have been removed, Sue says she has minimal pain. She has been told no baths, swimming or gym  etc for 6to 8 weeks, walking is very slow but she feels ok and unlike me she has no infection which is great. I intend sharing updates from Sue along with my own as every surgery is different with different progress and outcomes. If anyone has any questions please use the comments to make contact and I will answer as best I can. Thank you so much “Sue” for allowing me to share your story as well.

If  you are wondering about the spelling of Lymphoedema / Lymphedema the first is our spelling in Australia and the second is the American spelling… Both are acceptable!!!

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Fire.. Photo Helensamia

Lymph node Transfers and Transplants are the same surgery.

 

25 thoughts on “Lymph Node Transfer… USA

  1. I’ve had lymphedema in my lower left extremity since 2002. I use a Juzo compression stocking everyday. I have a Jovipak & Flexitouch pneumatic pump I rotate using every other night.
    I am told not to do the micro lymphatic surgical procedure yet – that there is high risk of developing lymphedema in the area the node is harvested from – this from my/a top surgeon at Stanford Hospital in Palo Alto, Ca.

    • In doing this surgery there are so many pros and cons… I guess like every new area of medicine the drs have to build experience… It was a difficult choice but i decided to go ahead and i do not regret that. Only time will tell if it was a mistake but at the very least it gives hope for the future…and lessons learnt… Helen 🙂

    • Hi Greg — my surgeon at the University of Pennsylvania Hospital, is a Stanford graduate and a U of Penn Medical School Graduate. I disagree that it is too soon for you to consider this surgery. I had left leg lymphedema since 2007 and following my surgery on 4/12 of this year, I have noticed small decreases in the left limb size every day. Check out Dr. Kanchwala at the University of Pennsylvania. If I did not have this surgery, there was no hope at all for my leg to get better. I too used the compression hose and Flexi-Touch every day and until the surgery, there was no progress in my leg. Just my opinion but hope you will consider it. Sue

      • Hi, Sue. I am from NJ and I also suffer from leg lymphedema. For me, I have not had any surgery or lymph nodes removed that may have caused this to happen. It could have been from a car accident crush injury many years ago in the upper knee area. I went to UPenn to have a lymphoscintigraphy scan done a month or 2 ago. Left leg normal with right leg very slow uptake of dye unpassable at the knee. Great. Now what? My Elvarex garments just don’t seem to be doing the job in containing the swelling and it’s frustrating, unbearable, and depressing me more and more. I don’t know who this person is. I’ve been seeing a great physiatrist and she has discussed surgery with me. But, I feel that I am alone in this decision and it’s difficult to know where to turn. You are very brave and I admire your determination in pursuing the surgery. Did you find this guy at UPenn to be well educated in this condition? Has he performed many of these surgeries?
        I hope you’re feeling OK and you heal well and most importantly, start improving and seeing reduction in your leg in the very near future.
        With warmest regards,
        LD

        • Hi Lisa I will let Sue know so that she can answer your questions… What ever decision you make it has to be yours as everyone is different in there needs… Good luck there are new things happening all the time.. Keep reading the blog and collecting info that may help you …. Helen

          • Helen,
            You are amazing! I want you to know that just being in a space where we can all learn from one another and share our joys and fears is what makes life. Thanks for welcoming me.

            Lisa

            • It is wonderful to meet and share with everyone. It helps us to not feel so alone and it has really helped me to get through this. I am glad that you are part of this community. Helen 😃😃

  2. I was so excited to find this blog site. I have suffered from lower left leg lymphedema after uterine cancer in 2009. I had a hysterectomy and 19 nodes removed 10 on one 9 on the other. Immediately after surgery I had swelling in the pubic area that would swell from right to left and settled on the left side. Then in 2010 I flew in a plane with a scratch on my left leg and when the plane landed I noticed both ankles were pretty swollen. The right ankle subsided but the left never did. My oncologist sent me to have a Doppler study done to make sure I didn’t have a blood clot. Then I was sent to a lymphedema center for consult. I was diagnosed with lymphedema and had no clue what it was. Noone ever mentioned this to me prior to surgery or after. I did therapy, compression hose, bandaging, and flexitouch. Over time the lymphedema progress up the calf, then knee, upper leg and groin. In 2010 I decided to go back to school and got my BSN. I currently work in the NICU and being on my feet the lymphedema was just completely out of control. I have had to go up 2 shoe sizes just to get one on and 3 sizes in clothes to fit the leg. I only wear long dresses or my scrubs to hide the leg. My leg would swell so bad I couldn’t even bend my knee or ankle. There were times where my skin felt like it would rip open. I have developed bad stretch marks and depression was almost taking me down. I had even told my mom that amputating the leg would be better than this. It was hindering everything about my life. Nothing was working period. I started researching anything for help. I found articles about Dr. Becker and the lymph node transfer. I flew to California to meet with a surgeon by the name of Ganzow. He said I was a definite candidate for the surgery but he didn’t accept insurance for payment. His fee was $25,000 per cut and told me I would need 3. I didn’t have $75,000 to give him and wait for reimbursement back. He asked me why I didn’t go to MD Anderson in Houston, Dr. David Chang, since I live in Fort Worth. As soon as I got back home I contacted them for an appointment. I had the lymph node scan done with the dye and it showed I had severe lymph blockage as the dye never left my foot on the affected leg. This was done in March 2013. Dr. Chang was a very pleasant and funny doctor. Has a great bedside manner. He informed me that I was a candidate for the surgery and he could do either the lymph node transfer or by pass which ever I preferred. He said both are good. I told him that I would leave it in his hands to decide and he said that first we have to see what the insurance will pay. Right then I started praying for God to make a way for me. I had my church and everyone praying. I got the call at the beginning of April that my insurance approved BOTH procedures (miracle from God) and Dr. Chang suggested we go ahead with both he was shocked they approved both. Surgery scheduled for June 6. When I arrived in Houston on the 5th for pre-op I had a scan done to determine the difference in size of my left leg from my right. I was at 24% and Dr. Chang said the leg was a lot worse than when he saw me in March and that he wasn’t sure he would be able to to the bypass procedure. I just told him to do what he could do and we would let God do what he couldn’t. My surgery was at 5:15 am and lasted 8 hours. I had a bad reaction to the dye they used in surgery to view the lymph channels which told them they couldn’t do the bypass. They removed lymph nodes from my neck/collar bone area and transplanted them to the groin. Apparently I had severe scar tissue that was causing a lot of my lymph problems that they cleaned out before transplanting the nodes. When I woke up I had a JP drain in my neck and groin. I was told not to get out of bed period for 48 hours and I couldn’t put any pressure on the groin site. It had big capital letters with a sharpie that said NO PRESSURE. I was in a lot of pain but I have a low tolerance. I am not a back sleeper I sleep on my stomach so I was pretty miserable. I was allergic to the morphine and was itching like crazy everywhere. I was just a hot mess. I was afraid to look at my leg so I didn’t. I was scared to be disappointed. Then this small voice said you trusted Me for this surgery didn’t you? When they unwrapped my leg bandaging I couldn’t believe my eyes. I had toes that didn’t look like sausages and an ankle bone I hadn’t seen in 2 years. Wow!!!!! I was bawling my eyes out. I can’t thank God enough for this miracle in my life. I am 24 days post op now and my leg still looks great. My knee and upper leg are still swollen but it’s hard to know what is lymph fluid or just normal swelling from my leg being cut open. My incision on my neck is pretty intense looking but I promise you I could care less. It is beautiful as far as I am concerned!!! I am excited to see the progression and give God thanks everyday for His grace. I will be going back to work on Tuesday for “light” duty. I will keep in touch as to my progression. I am going to therapy 2xs a week for MLD and bandaging. I wear bandaging at night and compression thigh high during the day. I am hoping to get to wear the full compression hose so I can get some relief from the upper leg swelling. All in due time. If anyone out there is considering doing this surgery all I can say is that I just trusted God. Doctors can only do so much. I do think that the government needs to allow people to receive this surgery. Lymphadema is horrible. I am curious as to what you were prescribed to do post operatively about compression to the receiver site. Let me know!!! Christine 🙂

    • Hi Christine i am so happy for you.. That is great news. What a coincidence that i posted the video of Dr Chang today… I wonder if it would be ok to create a post out if your comment as you tell your story so well.. Every time we share we help others… People often miss the comments and yours is a wonderful story of success.. Did you have bandaging straight from surgery?? Post operative i use Ready Wraps from Solvaris.. Like bandages but velcroed on so easier.. Compression stocking for work and other times.. I am using nothing at night but elevate end of bed .. Leg looking much better. Would love to hear your updates too. my email helenbrd@bigpond.net.au. Lets stay in touch 😃😃

      • Nice to meet you Helen. Thank you so much. That is awesome that you posted a video of Dr. Chang. You can certainly create a post out of anything you like. I am very excited to be helping others and I have just joined the lymphedema bill before congress today. I am going to advocate my local senator here in Texas. I had bandaging done 24 hrs after surgery. I don’t know what Ready Wraps are never heard of them? I was curious where you were doing compression and if you were compressing the actual incision where the lymph nodes were transferred to?. My leg looks so much better already the only place that is significantly swollen is the inner thigh around my groin area. I was told not to compress past mid thigh because the receiver site in my groin needs to heal. I will definitely give you updates as well as I would like to know yours. Would love to stay in touch! My email address is texasrn4ever@outlook.com

        Christine 🙂

        • If you google Ready Wraps from Solaris you will find them i have them for a full leg in black!! Such a change from beige!! My nodes went into the knee so was not allowed to bandage or put pressure for three weeks.. I also had an infection after surgery so no MLD either so was a bit of a mess for a while!! I now am 4 months after surgery and leg is much better. It is a very slow process!!

      • That is awesome!!! I read that it takes up to 2 years to see full results. I am just glad it is getting there. Let me know if there is a way to post pics as I have great before and after.

    • I had a radical hysterectomy in 1999 at Cedars- Sinai Hospital in Beverly Hills. My pathology report shows that 47 lymph nodes were removed and 3 showed cancer. After massive doses of chemo and radiation, I went for one week of interstitial radiation therapy. My doctor never mentioned lymphedema and it wasn’t until the 9 months later that it developed. I have been living with it for 16 years and am so ready for liposuction and surgery. I need to find a doctor that is in-network with my anthem- Blue Cross. I have great insurance but was quoted $38,000 for the liposuction by a great doctor, but he is out of network. I am willing to go anywhere in the U.S. to get this surgery. I live in CA.

      • Bev, et al: were you able to find a surgeon? I’ve been living with lower left extremity lymphedema since 2002.
        I have the same insurance and live in Orange County. I went to Boston in 2013 was eventually approved but then decided to have the lipectomy at Stanford in 2015. Glad I did! Partially life changing now the next big decision…

        I’m getting mentally prepared for the VLNT as I was recently approved. Stanford is ready. Since the healing process is more intense with the node transfer and my MLD therapist works closely with a doctor at USC I will get a second opinion. Logistics of Southern California may take precedence.

        I also use the Ready Wrap by Solaris four or five days out of the week on top of a class 2 off the shelf Juzo. Before the surgery I donned a class 3 custom chap Juzo garment during the day and the Flexitouch (MLD) for an hour followed by the Jovipak the remainder of the sleeping hours.

        I also posted a You Tube video on donning the Ready Wrap by Solaris. You can find it here.

        Anyone wishing to contact me and see before and after photos of my leg may do so.

        g.shav@cox.net – Greg

        Happy, Healthy New Year for everyone in 2017!

  3. I would like to know who to contact. For trials in Florida. As i just learned. His surgery was done first time in Orlando. By one doctor ever here and his team.im on medicaid. In ft lauderdale and would like some guidance. So i can wear a shoe ;)and b a candidate for this surgery

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