trunk LE?

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mags20487
mags20487 Member Posts: 1,591
edited June 2014 in Lymphedema

I am 2 months out from my bmx and I still have quite a bit of pain down my sides which stops me from doing more.  I am not sure if it could be LE of the trunk because I am not sure of the symptoms of that.  Anyone who has experience with this?  I am waiting for approval from my insurance to see someone at a local Le clinic.  I have been afraid to up my exercise because of the pain I have.  It is right around the wound holes from the drains from the surgery and extends into my back a little. 

I posted this in the surgery sect too but figured this topic might be better here.  Any help or suggestions you can give would be appreciated.

Maggie

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  • kira66715
    kira66715 Member Posts: 4,681
    edited October 2011

    Maggie, I think your post got overlooked, there can be cording down the side,I'll put a link in for cording:

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

    Here's a link to truncal LE:

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

    There's a link to an article on the page also.

    I think evaluation by a qualified LE therapist, who can also do some soft tissue, scar work if needed, would be a great idea.

    Kira 

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  • mags20487
    mags20487 Member Posts: 1,591
    edited October 2011

    thanks Kira...Just made an appointment with a licensed lymph therapist for tomorrow.  So many things they just do not tell you when you have your breasts cut off!

    Maggie

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  • Lunakin
    Lunakin Member Posts: 120
    edited October 2011

    I have pain around the drain-tube site even 2+ yrs out, more than on the MX scar itself. The pain is easily triggered, and even a light touch there feels much harder than it should. I've heard other women say the drain-tube scar areas are more tender for them, too.  And you could have referred pain.

    But the best thing is seeing a LE therapist in person. Hope all goes well!

    And Kira is right; scar massage can be very helpful. Hard to do on oneself; if you have a good friend you're comfortable with, s/he could massage the area for you. The LE therapist should be able to teach you scar massage and provide handouts on techniques. 

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  • mags20487
    mags20487 Member Posts: 1,591
    edited October 2011

    The appt went well today.  She is going to see me 2x a week til I get some relief from the cording down both arms and both sides of my body. She says that I do not have LE yet so that was good to hear.  She is going to teach me the lymph massage too so can't wait for that.  I was so sad to hear that I should not go into hot tubs or my beloved hot bath at night as this would put me at greater risk.  That is my favorite relaxation thing I do for myself almost every night.  Sadness abounds.   But from the LE threads I should do everything possible not to get it.  I am also going to start asking all the nurses to take my BP from the leg from now on even though according to them I will not get LE if I just had the SNB on the right side.  LIARS!

    Maggie

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  • Binney4
    Binney4 Member Posts: 8,609
    edited October 2011

    Oh, Maggie, it sounds like you're in good hands! Wonderful! And what good news to hear you're still swell-free!Cool

    But yeah, the long, hot soaks are a major loss for me too. A long, luke-warm soak just ain't the same.Frown Sadness indeed! Brownies help some.

    (Love your adorable avatar, BTW. Is that your fur baby?)

    Gentle hugs,
    Binney

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  • mags20487
    mags20487 Member Posts: 1,591
    edited October 2011

    Not my baby just a cutie I found online.  My fat girl...she is an 18 1/2 lb calico is sick right now with a UTI...poor baby.  Brownies can fix almost anything.  made some a couple of weeks ago and mixed peanut butter, chocolate and rice krispies for the top YUMMMMMM!!

    Maggie

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  • orangemat
    orangemat Member Posts: 645
    edited November 2011

    I have an appointment with an LE therapist for next Tuesday. Most likely it's a rule-out, but best to be sure. Thanks again Binney for the push. :)

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  • Binney4
    Binney4 Member Posts: 8,609
    edited November 2011

    That's good news, EstherSmile. Keep us posted and let us know how it goes next week.

    Gentle hugs,
    Binney

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  • orangemat
    orangemat Member Posts: 645
    edited November 2011

    I met with the lymphedema therapist today. What a lovely woman! And the good news is, there's definitely no lymphedema that I need to worry about, truncal or otherwise. Unfortunately, she did confirm what my PS had originally mentioned might be the cause of my pain: a neuroma by my ribs that causes "zingers" throughout my nervous system when touched. I get these same "zingers" when my regular PT massages that area. The LE therapist went further, and palpated the areas by and on my breast, and said that scar tissue has been formed all around the implant, and that's why I'm having the trapped nerve and referred pain. She also said the myofacia all around in there was "a mess" (literally her words!).

    So she suggested using kinesio tape to help lift and support the area where the implant is bottoming out, and that would also relieve the pressure that's been put on my unstable shoulder (a chronic condition I've had for years; same side, of course). I go back next week. Fun fun fun!

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  • Binney4
    Binney4 Member Posts: 8,609
    edited November 2011

    Esther, thank you for the update! I'm of course delighted beyond words that it's not LE, but still -- no fun at all!Frown But at least it sounds like somebody was listening to you, caring, and getting down to the root of the problem. Hopefully having some answers will really move you toward relief. 'Bout time!!

    Let us know how the taping works -- sounds like a plan!

    Be well,
    Binney

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  • olearca
    olearca Member Posts: 215
    edited November 2011

    Esther, sounds like a really good therapist! Glad you got some answers and a game plan. Feel better!

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