L-Dex Scores/Physical Therapy

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kathabus
kathabus Member Posts: 205
edited January 2021 in Lymphedema

Hi--

The following are my L-Dex Scores:

  • -7.3 (Baseline before surgery/radiation in March '20)
  • 1.6 (July '20 after surgery/radiation)
  • 0.8 (Aug '20 Improvement after wearing a compression sleeve)
  • -0.3 (Oct '20 Improvement after 2 months of physical therapy/massage and added compression bra)
  • -0.6 (Jan '21)
I'm wondering if anyone had this slow SLOW improvement of scores like this. My nurse navigator who is the lead on this lymphedema issue wants me to go back and get more therapy/massage. And I guess I will.
I would love to hear from someone who had this issue. What was your result? Does the PT really help? Or will I just kind of hover around these numbers? I was told that I will probably have to wear the sleeve....um....probably forever. And it's ok. I get it. They're trying to catch this early so that it doesn't get worse.
I feel like I've done so much work for little improvement. Wondering if this is normal or what. Do I have to just keep being persistent? Or is this my new normal? Thanks ladies.


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  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited January 2021

    I'll be interested to read the answers. I never had an L-Dex score - although I definitely do have truncal & breast LE with some involvement.

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  • ThreeTree
    ThreeTree Member Posts: 709
    edited January 2021

    I too would be curious about what people have to say. I've never heard of an L-Dex score. I had some OT that included massage, etc., but I didn't know how much it might really be helping, or if it wasn't just an "in the moment" sort of thing and that as soon as I was back home and doing routine things, it would just be the same old problem again. I had a few sessions that were prescribed and then no more. The sleeve does help but of course I don't like the idea of having to wear it the rest of my life. I wouldn't want to have to go to regular massage appointments though either for the rest of my life. Uggh! There's just no real solid answer for this problem.

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  • kathabus
    kathabus Member Posts: 205
    edited January 2021

    This is a newer way of getting ahead of lymphedema. I'm not sure anyone will respond. But I am grateful for working on my issues early, and I guess I will be the forerunner on this one and I will be here to help the ladies who follow!

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  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited January 2021

    kathabus - please do keep updating. I've added this to my favorites.

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