Truncal or breast Lymphedema

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  • Galsal
    Galsal Member Posts: 1,886
    edited March 2012

    dang, wish i'd known that.  was up there today.  won't get back in until my appt  on the 15th.  and they're massively busy too.    will call and leave a message about it.  thanks Binney.

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  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited March 2012

    Carol 57:  Thanks for the nih study link.  Low and behold - it lists numbness as an indication of LE.  My exchange was 6 mos ago & I just had BS & MO check-ups.  Neither had an explanation for numbness under arm & all around the side & my back.  Since I only had 2 SNB on each side and no rads, all my docs are surprised why I'm questioning if continuing pain may have something to do with LE.  My PS doesn't answer any questions gladly, so at 7 weeks post exchange I took myself to an LE & Wound Care MD.  He said I had edema but it was too soon to determine if it was just post surgical swelling or actual LE in breasts & trunk. I'm still in a tight atlethic bra 24/7 as "real" bras are still painful.  I have a follow up the end of March.  I will definitely question him about the numbness.

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

    MinusTwo, I had only 5 SNB nodes removed and no rads, and my PS also wanted very much to believe that I had persistent post-surgical swelling.  I do think that some numbness is to be expected just as result of even SNB node removal, but all around the side and your back? It seems a stretch to me to paint that as post-surgical, i.e. temporary.

    Seven weeks--the LE MD I went to said it would be very difficult to distinguish between post-surgical swelling and LE for up to about three months, so he's on the same page as your guy. So it looks like you'll be waiting a bit more for a diagnosis.  In the meantime, my LE therapist has always maintained that manual lymph drainage works on surgical swelling as well as on LE; after my diep stage II, which included liposuction and left me with some pretty bodacious swelling, I used MLD to great effect in helping to tame that swelling beast.  

    So might you ask the LE/Wound care MD to write you a script for LE therapy, even if under the guise of working on post-surgical edema?  That way you learn how to do it, you help the swelling (whatever the cause), and you feel like you are DOING something to make progress here.  If the MD argues, well argue back, because you are feeling pain, and working with MLD is a very simple approach to try, with no downside I can think of.  Well, maybe cost, if your insurance does not play nice.

    Binney, if you're following this thread still, correct me if I'm wrong and you see any downside to pushing for LE therapy.  

    Carol 

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  • Binney4
    Binney4 Member Posts: 8,609
    edited March 2012

    I'm with you, Carol. I used wrapping and MLD to stop the swelling of my broken leg when the cast came off. It healed VERY rapidly without the usual swelling, and the ortho was amazed (but when I tried to explain what I did and why it worked his eyes glazed over and he merely grunted -- wha'?!!Yell) Sure couldn't hurt to see the therapist and talk this over with her/him.

    Let us know what you discover!
    Binney

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  • justmejanis
    justmejanis Member Posts: 1,847
    edited March 2012

    GalSal.....Just finding a certified LE specialist is great.  She should know what she is doing.  Mine is certified as well.  I hope as Binney said you can get refitted and get one that fits just right.  I don't know much about the sleeves, but may be wearing one soon.  I'll keep you posted.

    Everyone have a wonderful day!  Laughing

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