Lymphedema Treatment Options That WORK

  • It’s been three years since I underwent LVA and I have a promising update to share with those interested in the procedure: it works and three years later, I’m still experiencing benefits.

    What’s LVA?

    LVA is a super micro-surgery where the doctor creates small, shallow incisions in your affected limb to find and sew lymph vessels (almost the size of a strand of hair) into your vein to bypass blocked areas. Your lymphatic fluid ends up in your veins eventually, this just gets it there faster, and poses no risk or damage to your vascular system. My {amazing} doctor, Dr. Wei Chen, developed the ‘octopus technique’, which bunches several lymphatic vessels into one vein, increasing the success rate. LVA works best in early stages of the disease because you need healthy vessels to connect. The surgery is 4-6 hours, and you’ll likely go home the same day. Recovery is 3 weeks of bedrest with your leg elevated and wrapped; another 3 weeks still wearing wraps but can engage in light activity. At 6 weeks you get fitted for a compression stocking, and at 6 months you can begin to wean off your compression garment (depending on what stage you had surgery at….my disease was more progressed so I still wear a compression stocking).

    My leg responded immediately to the surgery. The swelling went down, and while it still swells after a long day, it doesn’t swell as much and is much easier to manage, going back down almost immediately. I travel a lot for work, and notice no difference in swelling when I fly. The texture and elasticity of my skin also improved. I still wear a compression stocking, but I had a more advance stage of LE by the time I discovered LVA, so some permanent damage was already done.

    Lipo for Lymphedema:

    A year after LVA, I underwent liposuction for lymphedema in my thigh. Lipo for LE removes fibrosis (hardened connective tissue) and fatty tissue that builds up because of the disease. Regardless of how much my leg was now draining, that fatty and hardened tissue had already formed and would not go away on its own. Recovery for lipo for LE is pretty painful. I spent three nights in the hospital and three weeks on bed rest with my leg wrapped and elevated. Then another 3 weeks back on my feet but had to keep my leg wrapped before I was fitted for a new stocking at 6 weeks. Totally worth it.

    I recently saw Dr. Chen for my annual SPY examine (that’s where you’re injected with a dye that allows you to see how the fluid travels through you LE system) – and we found that my leg is still improving three years later! The fluid is moving stronger and new pathways are forming. Lymph vessels in my thigh and groin areas were especially slow to drain or non-existent before the procedures. Now we can see with the SPY exam that the dye is moving faster once injected, and where there was once a black hole in my groin, is totally lit up with new vessels and pathways! 

    I get fitted for a new stocking every year, and every year my measurements get a little smaller. Pretty amazing to still see the procedures working.

    VLVT:

    In this last visit, Dr. Chen informed me that he could help further reduce the remaining swelling by doing another LVA procedure (he has an even newer technique) or by doing a newer procedure called VLVT -  Vascularized Lymphatic Vessel Transfer. VLVT takes a flap of tissue that includes lymph vessels and an artery from either your groin or forearm and attaches it to your lower leg (and the skin from your lower leg replaces your groin or forearm). VLVT is safer than lymph node transfer, as you run the risk of developing lymphedema in the donor site by removing the lymph node. VLVT does not pose that risk. 

    He started doing the surgery two years ago with great success - every patient has seen significant improvement, more so than LVA. It’s also much easier to get covered by insurance.

    Recovery is a 3-5 night stay in the hospital, then you have to stay nearby in Iowa for 2 weeks with wraps on - this is in case something in the healing isn't going well, they can see you right away to address it. Then you can go home, stay another week wrapped with your leg elevated. 

    I will likely do another LVA or VLVT, but Dr. Chen and I want to wait until my leg plateaus on the self-healing it’s still doing, so we’ll assess it at my next annual exam.

    Just F*cking Do It:

    Lymphedema is an incredibly frustrating and scary condition to live with. I went years managing just fine at Stage 1, then one day my leg flared up and didn’t go down right away….and then it didn’t go down at all. I saw so many doctors and specialists and tried alternative medicines. Nothing worked. On top of that, the traditional doctors and LE therapists all told me to not even consider surgery….that it was the worst thing I could do to my leg and would make it worse. Unfortunately I listened to them and I went from a Stage 2 to 4. Hopeless, depressed and scared, I said f*ck it -my leg is getting worse either way, might as well try surgery and take the risk. Had I done LVA sooner, at Stage 2, I wouldn’t even be wearing a compression stocking anymore. I don’t say this anymore with anger, but I do say it with urgency to those sitting on the fence, decreasing your chance of a full reversal.

     

2 comments
  • Lisa Baker
    Lisa Baker Hi. Thank you so much for posting this. I am trying to get some help. I had the dye study in December 2017 and was told I was a great candidate for the LVA surgery. However, it took my surgeon's scheduler 6 months to get my surgery scheduled. When I...  more
  • Brenna M.
    Brenna M. Definitely try Dr. Chen - he's done more of the surgeries in the U.S. than any other doctor - https://uihc.org/wei-f-chen