Finding help on Long Island, NY

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DeeBee
DeeBee Member Posts: 20
edited June 2014 in Lymphedema

I am new to this - Lumpectomy and SNB on 2/23 - and Saturday night i noticed a lump under my arm, a heavy feeling in my arm, the uncomfortableness when I reach going as far as my elbow which it hasn't done before and something like a tendon showing up in my armpit when I raise my arm.  I am waiting for the surgeon to call me back this morning and I know I am self-diagnosing from what I have read on these boards but if this is lymphedema and/or cording, I want to tackle it right away.  Does anyone have a recommendation for a therapist on/near Long Island, NY?  Also my friend had great success with lymphedema using an accupuncturist but I have no idea how to find one here.  Thanks for all the help I am finding on these boards.

Dee

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

    DeeBee--the "tendon" is cording, and it is very, very common--it's a thrombosed lymphatic. I'm going to give you two links--one to "axillary web syndrome"--which is what cording is, and it's also common to get it with an axillary seroma, the other is how to find a lymphedema therapist who can help you with the cording. The surgeons may tell you that cording goes away--it does tend to get better over the course of a few months, but it is very painful and increases your lymphedema risk.

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

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

    These are common post op problems and increase your risk of lymphedema, but please don't worry too much because there is treatment and most women resolve these problems with no further issues.

    Kira

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  • DeeBee
    DeeBee Member Posts: 20
    edited March 2011

    Kira - - So reading your link on the StepUp page, I think I may have over done the stretching since the lumpectomy and SNB on 2/23.  I am seeing the surgeon later today and will ask about how to now back off and get myself out of this.  I did find the name of a therapist on Long Island and will ask him about that but I might also see about a consultation on my own anyway although I never go against what doctors say but I am concerned that I handle this now.

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  • Nordy
    Nordy Member Posts: 2,106
    edited March 2011

    DeeBee - You didn't say where on Long Island, but when I lived there, I trained for LE therapy with a PT named Bonnie Lasinski. She is in Woodbury. She received her initial training in 1992 and has been working with LE patients ever since. Their website is:

    www.lymphedema-therapy.com

    I recommend her highly - and a consult never hurt anyone. Good luck to you. 

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  • DeeBee
    DeeBee Member Posts: 20
    edited March 2011

    Thanks so much, Nordy.  I had found her name via the referral sites that Kira referred me to.  It is nice to have a high recommendation.  The surgeon drained a seroma this evening so maybe that was the problem and I overreacted worrying about lymphedema.  I am now going to research that and see if there is a connection and what I can do to prevent that happening again.  I am trying to learn all I can without overreacting. 

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  • Nordy
    Nordy Member Posts: 2,106
    edited March 2011

    There was an article out recently regarding seromas and the increased incidence of lymphedema. I think it is somewhere within the Lymphedema boards - there should be a thread. Do go see Bonnie - even if you think it was only a seroma. She can take some early measurements, give you a ton of information and let you know what to watch out for and what to do in the event that you have LE occur. Good luck!

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