Lymph Node Transfer for Primary Lymphadema Legs (both of them) - Anyone traveled this path before?

[skinpro]

Hello, Wondering if anyone has had LNT surgery for Primary Lymphadema in their legs. I've flown from the US to Paris recently to consult with Dr. Corinne Becker. She states I am a candidate, but I am a tad concerned due to the fact that I have primary disease and wondering if I have enough 'healthy' vessels to harvest without causing issues elsewhere. She stated she would take from behind my breast vs. axillary areas to avoid possible problems in the arms.

[Lynora]

Hi skinpro

A few people on this site have undergone the procedure - you could use the 'Search' option to find relevant posts - use key words like 'lymph node transplant' or variations.

Have you been through the process of dye tests and MRI to check functioning lymphatics?

[skinpro in reply to Lynora]

Thanks will do! Just stumbled upon this site last night! So grateful for this info and community!

[CCT67]

I also have Primary LE in both feet and full legs.

Have you had a ICG Lymphographry scan which shows with the most accuracy of other scan the faults within your lymphatics? It maps and shows exactly what's happened to your lymph valves, vessels, nodes etc? I had this last year at Oxford by Professor Furniss and Mr Ramsden. I would not have any surgery on my legs of any kind without ICG Lymphography to help me have a better idea of the pathology of my legs and likelihood of the various surgeries being effective.

Professor Furness told me that due to the nature of the faults in my lymphatics, LVA and LNT would not improve my legs and put me at risk for other problems.

I know de Becker does good work and those with secondary LE have had good results. Primary is more iffy

If I were you I'd spend £650 to have a consult /second opinion and ICG Lymphography scan at Oxford Lymphoedema Practice (only place I know does it apart from in Wales) before making any decision about LNT surgery. Or you could consult with Dr Dancey in Birmingham who also does LNT surgery.

I would be very worried about LE in the area dr Becker harvests from. With primary LE our lymphatics are implaired and the area she removes from will be under even more stress with possible LE developing. She probably discussed this with you?

It's a huge decision so I fully understand your being cautious - it's the best way to approach it. Cx

[skinpro in reply to CCT67]

CCT67, thank you so much for your info! So very much appreciated! What was interesting (and gave me some pause) was the fact that Dr Becker was ready to schedule the procedure after reviewing MRI results which were only of my leg lymphatics. They did not do a full body scan to see what my nodes looked like in the area where she said she would harvest (close to breast. Not the underarm due to issues that could arise in arm). Im so happy to have come upon this site/feed. It's giving me much more information. While Dr Becker seems very compassionate, this isn't something I want to rush to especially if it could cause LE in other parts of my body. I also have lipoedema in my legs now which is causing a double edged issue with the lymphatic flow. She mentioned that she debulks the limbs using liposuction and in some cases skin reduction. Would love to have healthy, thinner legs but I feel a second opinion is something I should consider as you suggested as well! On a bright note, I've never been to England and this could be my catalyst to visit! Many thanks again! 😊

[CCT67 in reply to skinpro]

Hi skinpro

Where do you live in the US?

There are some good surgeons in Southern California and in St Louis. Google search Ninjas Fighting Lymphoedema. It's a charity in STL. Amy Rivera who started it has advanced Primary lymphoedema and has had nearly every surgery available for LE, but has undertaken them with caution. Her last op 6 months ago was completed by Dr Buck in St louis who is a Professor at Washington university Medical school and works at Barnes Jewish Hospital - the medical school and BJH are in the top 10 in America. She was in very good hands with Dr Buck and would be good to speak with and ask loads of questions

There are 3 US based excellent LE support, awareness, inspiration, wrapping, and fitness with LE groups on Facebook - lots of people on these pages have had the 3 main surgeries developed for LE symptom management, including LNT. If you search FB you should find them. I'm in the UK but as a dual national travel to the US a lot. Oh btw there is also a Lipidema support group on Facebook 😊

Your comment about Ms Becker being ready to schedule the procedure reminds me of what the LE specialist i chatted with at St. George's Hospital LE clinic in London - she said surgeons are always quick to schedule surgery because they are surgeons!

[Lynora]

Hi skinpro - you say you have primary l/e and Lipoedema - do you have lipolymphoedema - or, did the Lipoedema develop bi-laterally first, and lymphoedema later as a complication? I'm glad you are going to get more info. Debulking following liposuction isn't always successful. What form of compression are you currently using? Have you checked out Karen Herbst - US based lipoedema guru!

[skinpro in reply to Lynora]

Hi Lynora!

Sorry for this late response as I've not been on in quite awhile.

The lipoedema came second and it started after quite a few years post my Lymphadema. My weight has contributed to this I'm sure.

Right now I wear Mediven off the shelf compression hose 40-50hg. My GP here isn't very helpful and my current insurance is sketchy when it comes to advanced clinics in this realm.

It's been frustrating as I've been told 'wearing compressions is all you can do.'

I will check out Karen Herbst as she may be able to give some guidance!

Many thanks for your response here! So appreciated!

[HazieC]

Hi I have never heard of this surgery but it sounds fascinating, I wonder if they do it for secondary lymphedema as well? Keep us updated on your progress and good luck with any treatment you may go ahead with.

[skinpro in reply to HazieC]

Hi HazieC! I will absolutely keep you all updated! I hear it's actually better fitted for secondary LE.

Check out some info (including video links on the procedure itself)!

lymphoedemacenter.com