Post bilateral masectomey w/expanders

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Tpettis
Tpettis Member Posts: 20
edited June 2014 in Lymphedema

Lymph nodes were removed from right arm came back negative but from shoulder to elbow on bottom of arm has tingling feeling is this normal? I've been measuring arm and no change.

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  • carol57
    carol57 Member Posts: 3,567
    edited November 2012

    Tpettis, tingling can be a sign of LE. We can have up to 30% more than normal fluid in the arm with no visible swelling. You might ask for a referral to a qualified LE therapist, for an evaluation. Visit www.stepup-speakout.com, and look for the page about finding a qualified therapist. I am typing on my phone or would insert the link for you. If it IS lymphedema, catching it early gives you the best shot at keeping it very mild. Any of your docs can make the eval referral. Good luck!

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  • purple32
    purple32 Member Posts: 3,188
    edited November 2012

    Tpettis

    Carol is right.

    Were measurements taken prior to your surgery ?
    IF SO, call the surgical center and ask for a re-take.  These ppl. are highly skilled and some have  volumetric machines that measure  things before we can even see them.  An ordinary tape measure from a layperson may not catch it while it is still sub-clinical.

    It's great your lymph nodes came back normal, but unfortunately this is not a predictor of who gets LE.

    Good Luck.

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  • Tpettis
    Tpettis Member Posts: 20
    edited March 2013

    Well lymphodema therapist showed me how to get rid of the tingling. I ended up getting chording, 7 in the cancer side and 4 on the non cancer side. My measurements keep getting larger but lymphedema therapist thinks its due to the steroids. We will see I guess. I disvovered chording under the ecpanders. Mmanaged to pop one on my own. But cancer side no go to thick even for lymph therapist. Im doing stretches and then some and still thick. Any suggestions welcome.

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  • kira66715
    kira66715 Member Posts: 4,681
    edited March 2013

    Tpettis: chording is clotted off lymphatic vessels and some veins. The best authority I know on cords, which are also called Axillary Web Syndrome (AWS), is Jodi Winicour PT, and she strongly advocates AGAINST deliberately popping the cords, as  they are vessels that will sometims open and function again. And she had a case of lymphedema occur after popping cords, so if a cord pops while gentle stretch is applied, that's fine, but don't go after them.

    Cording is a risk for LE, as the vessels carry lymph and are damaged.

    Here is the page on SUSO on AWS--sometimes the chest cords are called Mondor's Syndrome, which is more veins than lymph, but I think they're all the same thing:

    http://www.stepup-speakout.org/Cording_and_Axillary_Web_Syndrome.htm

    The stretches help, and cording does get better on it's own, although all the cords don't necessarily go away.

    Let me know if you need more information.

    Kira

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  • Tpettis
    Tpettis Member Posts: 20
    edited March 2013

    Thanks saw my lymph therapist and the arm measurements are getting smaller and I have full range of movement back.

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