Surgical treatment for lymphedema

mellee
mellee Member Posts: 434
edited October 2019 in Lymphedema

I have had Stage 1 lymphedema in my upper arm and trunk since my double mastectomy and ALND in November 2016, but it's never progressed until now. Out of the blue a few weeks ago, my lower arm became swollen and my hand to a lesser degree. I'm now at Stage 2 and freaking out!

I have a fantastic PT who is going to work with me to treat this flare up. But in the meantime, I saw a surgeon at USC (Dr. Ketan Patel) who specializes in surgical treatments for lymphedema. I wasn't expecting to follow through with surgery, but I wanted to know my options.

But after meeting with him, I'm seriously considering it. What I'm probably looking at is a lymphovenous bypass. It's for earlier stage cases where the lymphatic vessels are still there and partially functioning but blocked (he described it as the 101 with traffic). What they'd do is go in at around 4 different places in the arm and connect lymph vessels to a nearby vein. Basically, they're rerouting the lymph flow in my arm from backed up lymphatic system into the cardiovascular system (which is where lymph fluid drains eventually anyway). It's considered "super microsurgery," because lymphatic vessels are 10 times smaller than veins.

It's a much less invasive procedure than a lymph node transfer, which is what they do for later-stage cases. But still, there are risks and it's not a cure—although it can make a huge difference in functioning and quality of life.

Am I nuts? Has anyone had this surgery for lymphedema? Either lymphovenous bypass or lymph node transfer? Was it successful? Are you glad you did it?

I would appreciate any and all input!

Comments

  • Trishyla
    Trishyla Member Posts: 1,005
    edited October 2019

    Wow! I'm exactly where you are, Mellee. I have stage one truncal lymphedema that has spread to my lower legs. I love to walk, but the more I walk, the worse it gets. As with my truncal lymphedema, I had to self diagnose. Most MOs are familiar with lymphedema in the arms, but nowhere else.

    I met with Dr. Patel about a month ago. He and I talked about the lymphovenous bypass as well. But again, since it's in my trunk and legs, not my arms, he wanted me to have a venogram to rule out venous insufficiency before proceeding.

    I'm having the venogram tomorrow morning at USC with Dr. McGee. He's a vascular surgeon who also works with the lymph system. He's pretty sure it's lymphedema, but wants to be certain before sending me back to Dr. Patel for potential surgery.

    PM me if you want to talk more. I can let you know what the venogram is like in case you need one as well.

    Trish

  • mellee
    mellee Member Posts: 434
    edited October 2019

    Good luck with the venogram!

    I'm going to contact Dr. Patel's office tomorrow to ask if he can put me in touch with any former patients who have had the procedure. I'll let you know if that happens. Also, I forgot to ask for before-and-after pictures so I'll be following up about that, too. I really want to know more about what it's been like for women who had the surgery.

    I'll send you my contact details so we can talk further. It would be nice to have someone to talk to about this who is going through the same thing!

  • SpecialK
    SpecialK Member Posts: 16,486
    edited October 2019

    I have been worked up for this surgery as well at Moffitt Cancer Center in Tampa, but don't want to do it until I can't control my bi-lat lymphedema with garments and a pump. Here is a thread with lots of info and BCO members who have had the surgery:

    https://community.breastcancer.org/forum/64/topics/818062?page=1


  • mellee
    mellee Member Posts: 434
    edited October 2019

    Thanks SpecialK! That thread looks super helpful.

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