Amoc, hello! There's a thread further down on this board called "Meeting with Dr. Becker Next Friday" that is all about node transfer surgery. There are currently many very enthusiastic surgeons in the US who are promoting this surgery, but no studies yet that show either its effectiveness or safety over time. Do check out the thread, and perhaps post your question there so those who have experience with it (or are awaiting their surgery) can answer any questions you might have.

Be well!
Binney

Yep, makes me wonder too.

Actually, I've heard a couple of these surgeons speak, and they each have a patient or two who is enthusiastic about their results. But when you listen to what the patients say, all they talk about is that they "feel better" about it, not so much that it's gone, or even easier to control. And I am also in touch with some who have developed lower extremity LE, though in at least one case the surgeon is denying her reality. Lymphatic surgery is experimental, and it's expensive. And some insurance companies have started paying for it (why, I can't imagine), which means more and more enthusiastic surgeons are appearing on the scene. Gives you something to think about, for sure.

Be well!
Binney

I went to a lecture from an experienced lymph node surgeon who is no longer practicing in this area.  His presentation was great--very clear and detailed.  He said patients who undergo lymph node transfer STILL must wear compression.  It's not an instant, easy fix (like we'd love it to be!).  

Could they harvest nodes from an animal and transplant the nodes to us? After all they use pigs hearts for cardio patients?

Mary, hello!

Are you considering transplant surgery yourself? You might want to read through the other thread here that I mentioned above--lots of information about Dr. Becker there, and it also mentions Helen's blog.

As for what might be the "correct" information, seeing as how there are no long-term studies regarding the safety and efficacy of this surgery (Dr. Becker has long claimed she's too busy curing LE to spend time accurately recording the results), it's been impossible--literally--to define "correct" in this regard. There's a new study just beginning in the US that may eventually shed some light on this--and we all sure hope it shows great long-term results!--but it will be a long time before anyone knows what's "correct" about LNT surgery.

In the meantime, we all REALLY, REALLY look forward to the cure for LE. Funding for LE research remains a huge problem, but increasing awareness of the centrality of the lymph system for our overall health is beginning to drive new interest in the science of lymphology. Whew! 'Bout time!

All best, Mary,
Binney

The blog that Mary refers to is mine.. I have had a lymph node transfer from neck to knee... When she says correct she means ... Real... Not like the videos the doctors show... This is a warts and all story of mine and others transfers... No it is not and instant fix as it takes up to two years for the lymph vessels to grow from the nodes.. For at least three months it is bandaging and MLD to support the surgery.. Then it is compression .. Much as we would love to throw it away... What I feel is the leg softening and it responds better to treatment... I agree this is very new and it takes brave souls to take the step on and unknown path ... However I hope by writing about it I give an accurate account of the emotional roller coaster that I an others are travelling on.. I see this as the way of the future when they have perfected the surgery.. Those having arms done show quicker success due to the area being smaller.. Also the sooner the better when the Lymphoedema starts before damage is done.. Please read my blog ask questions..

Thanks Mary for sharing .. Helen

Helen, thank you for clarifying, and especially for your gift of sharing your experience with all of us.  I am very heartened to learn that there is a formal research program underway in Sydney.  Do you know if there's a research-parameters document available to the public?  That's required when there are clinical trials in the US, and if such a document is available, I'd love to read it.

Thanks to you all and I hope I can support and help some of you as this is such a new area.. Carol I do not know if there is such a document here or what the parameters are. They have been doing both Lymph node transfers and liposuction for the more difficult cases.. Mostly arms after Breast Cancer treatment ... I do not see my Doctor again till October but will ask then.. Binney.. Thanks for your support.. I guess all new surgery starts somewhere. Dr Becker has been doing this for years but she has not documented it... A friend is trying to find some of her patients from years ago to see how they are .. But it is difficult...I guess with the Internet now we are able to access more info and share our journey and connect with others... This can only help ...

Hello Ladies

I am so pleased Helen has joined the forum and can help others.  I do not have lymphoedema myself but I do work with a lot of healthcare professionals working in this area and Lymphoedema sufferers in the course of my working day. 

I am interested in all research and new techniques, main stream and "alternative" in the battle to diagnose the condition early and for effective treatment and maintenance programmes for patients, both therapist applied and self treatment.  I share as much information with others as I can find.

In terms of research for Lymph Node Transfer surgery, I compiled the following, hope its helpful for you and you manage to access the studies - see VIEW at

                                               
                                                
2012    Microlymphatic surgery for the treatment of iatrogenic lymphedema, Becker C, Vasile JV, Levine JL, Batista BN, Studinger RM, Chen CM, Riquet M.      Department of Plastic Surgery, Lymphedema Centre, 6 Square Jouvenet, Paris 75016, France.

VIEW AT    http://www.ncbi.nlm.nih.gov/pubmed/23036289                                            
                                                
2012    Microvascular breast reconstruction and lymph node transfer for postmastectomy lymphedema patients. Saaristo AM, Niemi TS, Viitanen TP, Tervala TV, Hartiala P, Suominen EA.Ann Surg. 2012 Mar;255(3):468-73.                                             
VIEW AT    http://www.ncbi.nlm.nih.gov/pubmed/22233832                                            
CONCLUSION    Simultaneous breast and lymphatic reconstruction is an ideal option for patients who suffer from lymphedema after mastectomy and axillary dissection                                            
                                                
                                                
2009    Vascularized groin lymph node transfer using the wrist as a recipient site for management of postmastectomy upper extremity lymphedema.                                             
Lin CH, Ali R, Chen SC, Wallace C, Chang YC, Chen HC, Cheng MH.Plast Reconstr Surg. 2009 Apr;123(4):1265-75.                                             
VIEW AT    http://www.ncbi.nlm.nih.gov/pubmed/19337095                                            
CONCLUSION    Vascularized groin lymph node transfer using the wrist as a recipient site is a novel and reliable procedure that significantly improves postmastectomy upper extremity lymphedema.                                            
                                                
2008    Postmastectomy neuropathic pain: results of microsurgical lymph nodes transplantation.Becker C, Pham DN, Assouad J, Badia A, Foucault C, Riquet M. Breast. 2008 Oct;17(5):472-6.                                             

VIEW AT    http://www.ncbi.nlm.nih.gov/pubmed/18450444                                            
CONCLUSION    This procedure proved efficient and may be advocated in case of neuropathic pain when discussing lymphedema management.                                            
                                                
2006    Postmastectomy Lymphedema. Long-term Results Following Microsurgical Lymph Node Transplantation.Becker C, Assouad J, Riquet M, Hidden G. Ann Surg. 2006 March; 243(3): 313–315.                                             
VIEW AT    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1448940/                                            
CONCLUSION:  LN transplantation is a safe procedure permitting good long-term results, disappearance, or a noteworthy improvement, in postmastectomy lymphedema, especially in the early stages of the disease.                                            
                                                
2002    The cutaneo-lymph node flap of the superficial circumflex artery. Assouad J, Becker C, Hidden G, Riquet M.Surg Radiol Anat. 2002 May;24(2):87-90.                                             

VIEW AT    http://www.ncbi.nlm.nih.gov/pubmed/12197025                                                                                  
1979    Successful lymph node transplantation in rats, with restoration of lymphatic function.Shesol BF, Nakashima R, Alavi A, Hamilton RW.Plast Reconstr Surg. 1979 Jun;63(6):817-23.                                             

VIEW AT    http://www.ncbi.nlm.nih.gov/pubmed/441196

There is a very helpful Doctor in the US who is due to release his results of this procedure so, so at least we will have some more information.  I need to re-visit my emails and contact him again. I will let you know ladies.

Thinking of you all - Mary.

Mary, since this is a patient discussion board, I'd appreciate it if you would declare your affiliation in this--it always helps us to judge the information presented if we know the source.

The studies you cite are not indicative of long-term safety or efficacy, as they are not long-term studies or widely duplicated. Dr. Becker is the only one who could have provided that, and she dropped the ball in favor of pursuing her beliefs and her career. We will not have convincing long-term results until somebody has the courage and compassion (not to mention the funding) to undertake a long-term study.

And while it's certainly true that brave souls are needed to try new treatments, it is also true that people with LE are underserved by the medical community, their LE is vastly under-studied, and as a result they are unusually vulnerable to anyone offering them a "cure," however improbable or even disastrous. Brave souls are a far cry from desperate people, who deserve every protection, not the kind of hype that has unfortunately accompanied this endeavor.

Helen, I salute you for the efforts to contact former patients of Dr. Becker, and I'd love to help with that project, so will keep it in mind and let you know if I find any leads you can use. I'm assuming you're aware of the Vignes review of node transfer patients in Paris? That might be a good place to start. Let me know how we can help.

Be well!
Binney

Binney and Kira

It is not hard for anyone to do a search on the internet and find my details.  I did not post them on my profile because it wasn't pertinent to the posting I wanted to make.  You will also find, if you continue to read about me or our company that we do not sell Deep Oscillation to any patients who have not first had a successful course of treatment either by a private therapist or NHS hospital.  The aim of my posting was to share some knowledge on lymph node transfer and Helen's blog, not to offend, or sell.  Ladies make up their own minds about what they purchase, I certainly don't influence ladies either way.  The therapy is not disproven either, there are several studies which you can look at for breast lymphoedema, leg lymphoedema and after breast cancer surgery.  It is used in the Vodder Clinic in Austria for fibrosis too. So sorry you feel let down by me, that was not my intention whatsoever.  Helen will also, hopefully, let you know that I work with a lot of support groups for Lymphoedema and share research with Linked Groups, who value my involvement.  Sorry again to all those who disbelieve my intentions, I am not a bad person.  Mary

Gosh this is all getting a little heated up!! I think the one thing we all have in common is the need for more funding towards research.. More studies and more understanding. One of the reasons for my blog is to build awareness of Lymphedema, to educate people. Even my closest family were shocked at some of the things I write as mostly I hide what it really feels like.. One of my posts is actually called... "Reflecting!! Am I crazy" this was pre surgery as I became more anxious!!! The lady who was due to have the surgery after me has differed at this stage to await more outcomes!!! She asked me questions and I was honest!! However I do not regret going ahead with the surgery .. I will wait another 18 months for real answers.. But I went into this with my eyes wide open with the knowledge that I was stepping into the unknown.. And I hope I can give a true and honest account of mine and others journeys that may help future research.. Someone had to have the first heart transplant and that seemed amazing... Now along with other transplants it is main stream treatment.. Yes I know I am crazy but I think it turns the light on for the future!!!!! Binney I will look for that review.. So far my friend has found one man who had the surgery 20 years ago with Dr Becker. He says he has had 20 good years but the Lymphedema has returned now but not as bad.. I have not met or seen this person but will keep on the track of this.. Good wishes to you all.. Helensamia

hello everbody,



it is true that it is hard to find people who have had this surgery and outcomes...

i have spend some time on old french forums too and i have had some people who answered me

- there were two of them it did not help and others who told me they have lost several cms and were very happy with surgery.

i saw also two testemonies from person that had donor le afterwords but this was not in personal mail to me and do not know from which doctor.



i understand that you delete the links above,but to me the 'study'from dr.vignes is as vague as the ones from dr.becker. the patient are random,not categorizes by primary, secondary , lower and upper limb...all mixed together AND does not mentione the doctor.

if i do a transplant i will screw up for sure....i think very important info is missing.

and why are we putting everything on a 'investigation' on dr.becker while there are very capable doctors like dr.vasile,dr.dayan,dr.koshima, levine, massey, ....who perform this surgery already also several times? would they still do it and risk there image when risks where as high as dr.vignes claims it is?

Hi all I just thought I would give you a link to the latest posts in my blog.. Written by a lady who has had breast cancer and has now had surgery for a Lymph node transfer and lymph bypass by Dr Chang in Chicago... It is in three parts .. Breast cancer.. Lymphedema and third part surgery which will post tomorrow ... 24th December.. As always I make no judgements on this surgery I just bring the patients story.. Lisa is happy to answer any questions so just post them as a comment in the blog and I will pass them on to her.. Wishing you all a very Happy Holiday Season.. Christmas and New Year. 🎄🎅🎄🎅🎄🎅🎄🎅

This is the link..

http://lymphnodetransplant.wordpress.com/2013/12/23/part-2-breast-cancer-lymphedema-and-lymph-node-transfer/

Maxine, it's great, great, great that you've had such success with Dr. M!  And I cannot thank you enough for taking the time to post your experience here.  There's precious little information being reported about patient followup, so our best shot at following patients' outcomes from node transfer is if the patients share the information. Believe me, there are many, many women with breast cancer related lymphedema who are hungry for outcome information.  So thank you again, and please keep the information flowing by returning here from time to time to tell us how you're doing.

Carol