I am new here and wondering ...

[BRachel]

Has anyone had or heard of others who have had, Lymphaticovenular anastomosis (LVA) or lymph node transplant (LNT) to help with abdominal or genital lymphedema?

[Lynora]

Are you in the UK or overseas?

Have you found a surgeon who is doing this form of microsurgery or still looking?

I have met people who have had LVA/LNT for limb lymphoedema, but not abdo/genital.

[BRachel in reply to Lynora]

I am in Alaska.

I know of several Doctors doing surgeries based on my online searches. But it seems everything I read is related to leg or arm swelling.

Although mine started in my left leg after cervical cancer, it is also in right leg, abdomen, and most frustratingly genital, with the addition of blisters that are a source of rather regular cellulitus infections and lots of discomfort.

[Lynora in reply to BRachel]

Hopefully someone from your side of The Pond, will jump in and advise. (This site is based in the UK, but has participants from around the world!)

Could you contact the surgeons you have researched, and simply ask - do you have any experience with regard to LVA/LNT for genital lymphoedema? They may come back with detailed information about options for treatment.

In the meantime, are you under the care of a lymphoedema therapist?

[BRachel in reply to Lynora]

Thank you for your response. I guess in my experience medical staff never takes the time to answer questions, unless I have an apointment. But I am getting the idea that is not always the case.

Yes, i have seen and continue to see a lymphoedema therapist.

Again, thank you!

[sharon1234 in reply to BRachel]

I have the same lymphedema as herself after cervical cancer but mine is in my left leg my lower stomach and and lady area but just on their left side the same side is affected it's like somebody has drawn a line down the middle and it's my left leg left side of the lady area and all my my lower stomach and left side of my backside I think I would love of a transplant if there were such a thing that they worked out anything like that on the NHS in the UK and I would love to know no people who have had transplant in the area of lymph nodes I am very interested especially the cost of it. Kind regards Sharon from the UK

[CCT67]

Hi BRachel

The most reputable LE surgeon near you is Dr Jay Granzow in Southern California. He was one of the very first LE surgeons in the US, he undertakes all the current available surgeries for LE and LI. Other surgeons across the US have recently started offering the surgeries but are much less experienced than Dr Granzow. Probably your next best option would be Dr Chen at U of Iowa.

I personally know two Lymphies with lower limb LE who used Dr Granzow (SAPL and LVA surgeries) and they have excellent things to say about the entire surgical experience and personal approach Dr Granzow takes with his patients.

Both Dr Chen and Granzow are affiliated with the Lymphatic Education & Research Network/LE&RN. Take a look at their informative site - it’s the only international Lymphedema charity (based in NYC) and is doing brilliant work to raise awareness, raise millions for research etc. Actress Kathy Bates is the National spokesperson.

You may also find the National Lymphedema Network site useful - their patient support forum is at Inspire.com And if you’re on Facebook look for the group Lymphie Strong Inspiration Group probably the best LE virtual support group on the planet.

Best to inquire with Dr Granzow or Dr Chen about LVA and LNT surgeries for genital LE. The reports on this site (UK based) and US lymphie sites are from lymphies who had surgeries on their limb.

In the meantime, try to find a Certified Lymphedema Therapist/ CLT-LANA if you haven’t already. I realise depending on where in Alaska you live it may be more difficult to find one. (I loved the summer I spent in Alaska back in 1987 such stunning beauty and ruggedness). LE&RN has a good therapist search feature for CLTs.

Here are links for the surgeons and LR&RN

lymphedemasurgeon.com

lymphaticnetwork.org/living...

uihc.org/wei-f-chen

[BRachel in reply to CCT67]

Thank you so much for your reply. You have given me some very helpful information! The doctors you mention are actually among the 4 names I have narrowed my search down to for surgeons.

I had not heard of that Facebook page but I just requested to join. I had somehow forgotten about LE&RN and will be going back to check out the resouces they have.

[CraigDavidson]

What I'm reading only a certain criteria of people can have it in my case I wouldn't get it even if I paid it myself think It depends on how far it's gone but what I'm reading could be a very good precaution for some forms of lymphoedema