Back after years - lymphedema surgical resources?
Hi everyone. I was diagnosed with lymphedema I think in early 2011, so it’s been a while. I used to be on this board a lot back then. I’ve stayed active and used compression and not had much trouble with flares of swelling. My swelling never goes away completely, but it’s still soft and it’s honestly quite subtle to the eye. I’ve had doctors refuse to believe I even have lymphedema until I tell them how many times I’ve had cellulitis. But there’s the problem - cellulitis. I am just out of the hospital after a particularly bad episode. It’s not the first time I’ve been hospitalized. I try so hard to be careful, but it still hits me hard out of nowhere.
Does anyone have any personal experience with node transfer surgery for recurrent cellulitis, but not late stage lymphedema? I see it listed as an indication for the procedure on some websites, but I feel like I’m searching so randomly. I just don’t know what else to do at this point. I’m particularly scared because my knees are seeing the end result of a lot of sports and I’m awaiting a replacement. The Infectious Disease doc told me I was lucky I hadn’t done that already because I was so bacteremic with this episode. An infected knee prosthesis is leagues worse than an infected arm.
If it makes a difference, I am in the SW, in a small city with overtaxed medical resources. Phoenix and Denver are the nearest big cities.
Comments
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@outfield Thank you so much for sharing this, and we’re really sorry you’ve been dealing with such a tough episode of cellulitis. And welcome back after all these years!
Even after years of carefully managing lymphedema, it can be so discouraging when infections seem to hit out of nowhere. Everything you’re feeling—fear, frustration, uncertainty—is completely understandable. 💗It makes sense that you’re looking into every option, especially with a knee replacement ahead and the worry about infection risk. While some centers do list lymph node transfer (also called vascularized lymph node transfer, or VLNT) or other microsurgical procedures as possibilities for people with recurrent cellulitis, experiences can vary, and it often depends on the surgeon and the stage or pattern of your lymphedema.
We don’t usually hear many first-hand stories here from members who’ve had node transfer specifically for recurrent cellulitis, but others may be able to share. What many have found helpful is seeking out a certified lymphedema therapist and a specialized lymphedema clinic or surgeon—often at larger cancer centers or plastic surgery programs—because they tend to have the most up-to-date options and can help determine whether you might be a candidate.
If Phoenix or Denver are your nearest larger hubs, it could be worth checking whether their cancer centers or reconstructive microsurgeons have lymphedema programs or offer consultations, even virtual ones. Sometimes just speaking with someone who sees many cases like yours can bring more direction and reassurance.
You’ve managed this for a long time with so much care, and it’s completely understandable to feel worried about what comes next. We’re here with you as you explore your options and take the next steps.
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