advice

KBeee
KBeee Member Posts: 5,109
edited August 2017 in Lymphedema

For those of you who had lymphedema flares, who (which doc) did you contact to address it? I suddenly developed new cording last Thursday and by Friday started getting lymphedema in my hand. It is not horrible, but it is very noticeable, and it has not decreased despite wearing my sleeve all weekend. I don't know if I should just get another referral to LE specialist, or if I should have them evaluate the axillary area first since I have already had one recurrence.

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  • ChiSandy
    ChiSandy Member Posts: 12,133
    edited August 2017

    When I first detected a forearm cord I contacted an LE doc—my cancer center’s hospital has the top LE doc in the region (he was listed in Chicago Mag’s “Top Doctors” issue—the survey is by peers, not one of those phony pay-to-pay “best of” pseudo surveys). He is also a founder of LANA and co-writer of the Lymphedema Treatment Act. Otherwise, I’d probably have contacted my BS’ office, since her NP was the one who during my pre-op “teaching session” first mentioned the risk of LE and measured me for compression wear.

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  • KBeee
    KBeee Member Posts: 5,109
    edited August 2017

    Thanks for the thoughts and advice. I called, then had to get a referral, and am now scheduled to see the Lymphedema Therapist next Wednesday. I now have pitting edema in my hand. My arm is not very swollen. I am hoping it improves, and does not progress over the next week

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  • tessu
    tessu Member Posts: 1,564
    edited August 2017

    Are you just using a sleeve? No glove or gauntlet? That might be why fluid is collecting in your hand. Glad to hear you've got an appointment for help

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited August 2017

    kbeee - can you get into a pool? That may help with your flare until you can be seen. I also wondered if you are wearing hand protection. If not, your sleeve may be forcing swelling down into your hand.

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  • Binney4
    Binney4 Member Posts: 8,609
    edited August 2017

    KBeee, here's some information about what you can do while waiting to see the therapist:

    http://www.stepup-speakout.org/How_You_Can_Cope_wi...

    Hoping you soon have the help you need!
    Binney

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