Lymphedema update: upcoming surgery + pump

I’m a candidate for surgery for the lymphedema!  And a I get my new “pump” next week (shipped today). My co-pay is $600 (15%). Regence paid more than that for the single-sleeve-pump that did not work.

Hopefully I get new compression glove/sleeve next week, too.

The anti-inflammatory (Ketoprofen) that I’ve taken for a month started to feel like it might be working the past few days. The doctor at Stanford who has studied it (who is a friend of my doctor) says three months for maximum impact. So, continuing.

My MRI shows two lymphatics on the ulnar (outside) side of the wrist. There is an area of dermal backflow on the proximal ulnar forearm. There also appeared to be some to my eye on upper arm but Dr Neligan was focused on lower.

I am a candidate for LVA at the wrist (connecting lymph vessels to veins) plus VLNT (vascular lymph node transfer) to the forearm. We also talked about releasing the main vein in the underarm; the MRI wasn’t definitive there.

From the reading I did last night … docs at MD Anderson are recommending LVA and VLNT in combination. The former kicks in immediately but there is long term risk of vein collapse. The transfer doesn’t start working for about six months.

I haven’t found as much about surgically releasing the trapped vein. And most of what I read was dated 2017 and 2018 and from all over the globe.

So it’s all pretty new and everything I read was in open journals. 👏👏👏

Challenges due to newness:

  • no agreed upon staging (although I seem to be stage 2)
  • no agreed upon/research-based sequential treatment protocol
  • few research-based risk factors (for example, what I was told about flying without sleeve triggers it, that doesn’t seem to be true)
  • challenge of shifting treatment from “let’s try all these things to see what doesn’t work” (conservative) to “let’s have a surgical intervention early while it’s still do-able” (proactive)
  • researchers seeking gene/marker for BC patients who are genetically at higher risk

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