Is this lymphedema??

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Romi17
Romi17 Member Posts: 15
edited June 2014 in Lymphedema

my mom had a mastectomy 3 months ago and a lymph node dissection. She says her arm feels tired like when you excersice too much and it also feels harder like if it has more muscle than the other, she does excersice to get her shoulder mobility back again. She says she feels no pain and no sense of fullness or heaviness. Just tired and its harder. She has no swelling. Is this lymphedema? Or is it something else? Please help!

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  • Kicks
    Kicks Member Posts: 4,131
    edited April 2014

    It would be a good idea for her to see a CERTIFIED LymphEdema Therapist - not some PT  (or OT) who claims to 'know all about LE'.   It is always a good idea to get a good base line assessment done, even if there seems to be nothing developing/developed.  She will also get information/education about what LE is and so much other valuable 'stuff' rather or not she has developed LE at this time.  ('Time' is not respected by LE - it shows up in some relatively quick [mine showed up 8 weeks post surgery], some - a bit longer, some - many years later and some - never.)  

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  • cookiegal
    cookiegal Member Posts: 3,296
    edited April 2014

    I developed LE while I was doing exercises for frozen shoulder.

    The swelling can be subtle, and I have found if it starts in the upper arm, it can confuse diagnosis.

    I would say that your mom should defiantly see an LE, and maybe a physiatrist.

    Also a low compression sleeve and glove, if it's fitted well, might not hurt.

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  • vlnrph
    vlnrph Member Posts: 1,632
    edited April 2014

    I hope the surgeon has pre-op arm measurements on file for comparison. Have you called their office to describe this situation?

    Longer term LE can result in fibrosis, where hardening of swollen tissue occurs but this seems too soon for that. A blood clot may need to be ruled out, so don't delay in reporting these symptoms.

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  • Romi17
    Romi17 Member Posts: 15
    edited April 2014

    Thank you!

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  • Romi17
    Romi17 Member Posts: 15
    edited April 2014

    we went to the doctor yesterday and he said it was nothing, that it was nos lymphedema 

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  • Kicks
    Kicks Member Posts: 4,131
    edited April 2014

    She may  not be dealing with LE at this moment BUT having had nodes removed she is at risk the rest of her life.  Any surgery, rahter or not nodes are re moved, or trauma can result in LE developing.  I have a friend who had minor, non-invasive knee surgery who deals with more LE issues in her leg than I do in my arm with 19 pos. nodes removed.

    Unfortunately - there are MANY Drs who are ignorant about LE.  Thankfully, mine were not among those.  With  nodes removed, even if there truly are no indications that LE is present - an evaluation with a Certified LymphEdema Therapist is in order for all who have had nodes removed.

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  • glennie19
    glennie19 Member Posts: 6,398
    edited April 2014

    My surgeon told me I didn't have LE. Then I saw my oncologist 10 days later and he measured my arm. It was only slightly larger than the other, but it was my non-dominant arm, so that was significant.  Plus most of my swelling is truncal, and I think most doctors are not used to seeing that.  If the affected limb isn't HUGE, they don't think anything is going on.  

    I think if you can find a certified Lymphedema therapist, it would be worth while to pay her a visit. At least have measurements done, so that she has a baseline.

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  • LAstar
    LAstar Member Posts: 1,574
    edited April 2014

    It's good to get fitted for a sleeve and have it on hand.  Sometimes I have some discomfort that I think is from something else.  When it doesn't go away, I try my sleeve and that usually takes care of it.  The symptoms can be so subtle but annoying!

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  • Binney4
    Binney4 Member Posts: 8,609
    edited April 2014

    Rom, I've had lymphedema for almost ten years now, in both arms, both hands, both sides of my trunk, and now in my lower right leg. My surgeon still says he's never had a patient of his develop LE, and has never acknowledged that LE is what I have. This is largely ignorance--LE is not a subject that's taught much in our med schools, and there's no medical specialty that will lay claim to it--but it's also a large dose of denial. The medical professionals who diagnose and treat lymphedema are not doctors, but well-trained lymphedema therapists. Do go see one. Any doctor on her team--even her PCP--can write her a referral. 

    Be well!
    Binney

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