Isolated hand LE associated with breast LE

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KS1
KS1 Member Posts: 632
edited June 2014 in Lymphedema

Sorry for the long (self-involved) post but, I need some advice.   Here goes ... 

I need new day garments because my old day garments aren't  containing my hand swelling  well (have to wrap at least 16-18 hrs/day).  My old LE clinic no longer fits garments, so I went for an evaluation at a new LE clinic where the LE therapists supposedly do, with the idea that I would get measured for new garments.  

The new clinic is nearer to my house (< 45 minutes away), in-network and the head of the clinic seems very nice, experienced and knowledgeable, but they only  fit garments for "simple" cases (not custom gloves for tricky hands like mine) and I am not sure how experience "my" therapist is.  I  need to decide whether to go to them or stick with my old LE clinic (which is 2.5 hours away), since neither place fits garments.  

At the new clinic, the head therapist and "my" therapist say I have a fair amount of axilla/back/breast swelling and marked hand swelling, but little arm swelling.  They said that they find that with women who have isolated hand swelling and  breast/back/axilla swelling, the key to getting the hand stable is to address the trunk swelling.  So they propose to work on my back, axilla, and breast extensively (laser & myofascial release for scar tissue, MLD, flexipump) 3 times a week for several weeks, and only then turn to the hand.  

Has anyone heard of an isolated hand swelling/trunk connection?  Does this ring true with people with isolated hand swelling?  Any thoughts on their plan, especially the flexitouch part? 

Thanks!  KS1

PS If anyone knows anyone (therapist or fitter) in NJ/NYC area who does a decent job fitting garments, please PM me.  

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  • Binney4
    Binney4 Member Posts: 8,609
    edited February 2013

    KS1, my experience completely bears out their theory that addressing the truncal swelling is crucial to controlling hand (and arm) swelling. But not alone. MLD to the whole arm/hand needs to be involved with every treatment. I'm personally suspicious when therapists want to use a pump, because their hands are far more effective, and their hands are trained to feel any problem areas and to work accordingly. Too many therapists use pumps as part of treatment as a short-cut to hands-on work.

    Laser use in the axilla and shoulder area is something I'd never agree to for a couple of reasons. Laser is contraindicated in areas where cancer is present, and since we can't know if stray cancer cells may be present in the area I sure wouldn't want to stir anything up. But also because there is some very small, strictly anecdotal experience of RIBP being triggered after laser usage in the area of the brachial plexus.

    All of which is, of course, JMHO.Wink Do let us know what you discover. Gentle hugs,
    Binney

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  • purple32
    purple32 Member Posts: 3,188
    edited February 2013

     They said that they find that with women who have isolated hand swelling and breast/back/axilla swelling, the key to getting the hand stable is to address the trunk swelling.


    KS1 and Binney

    Many thanks for this important info!

    I noticed my breast LE immediately and  it never resolved ( like normal post surgical  swelling)  Frankly, it didnt bother me that much because

    1. I was totally ignorant of LE and the serious ramifications.

    2. It was  in a 'hidden  area".


    3. The BS poo pooed it COMPLETELY.


    But, it did ' nag' at me.


    The thing I GRRRRrrr most about wiht my own LE is the hand.  I hate having to wear a  glove( cant wait for summer Yell !)  I sure wish I had this info before, but now that I do , I will focus more on the trunk, and I will specifically ask my LEist to as well.
    THX Ladies !

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  • KS1
    KS1 Member Posts: 632
    edited February 2013

    I'd love to hear what your therapist says.  Just to clarify ... the back/isolated hand swelling was just the observation of the LE therapists at one particular clinic.  I know of no studies that address this and, none of the other therapists I have seen ever mentioned a connection.  Frankly, it seems a bit odd anatomically speaking.  But then LE is certainly odd.  KS1

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

    KS1--although my swelling is pretty much isolated to my hand, there are subtle changes in my forearm, and above the elbow.

    I did recently start myofascial work on my breast/trunk where I have a lot of fibrosis and it has helped my arm/hand--

    That said, this business of ignore the hand and just treat the trunk makes no sense. Yes, you should clear the proximal blockage, but it's not a simple process: it's inflammation and fibrosis and in my experience and my training as a CLT, we cleared the trunk more in the abdomen and learned to move fluid above and below and through the unaffected breast, but not the myofascial stuff.

    I've never seen a study, but all the MLD sequences I learned in Klose training spent a lot of time on the abdomen, upper trunk and back and the arm/hand were kind of an afterthought. We cleared proximally to let distal drain. But what if distal is still blocked by fibrosis and dysfunction?

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