do I have Lymphadema

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lauralu
lauralu Member Posts: 100
edited June 2014 in Lymphedema

Hi I have posted here before along time ago..I have not had an actual diagnoses.I am not swollen up like the photos posted here. My problem is that I am having issues with both arms. Mostly they look odd. After my breast reconstruction I have tightness in my chest. I guess for some it is normal. Then my arms starting at the armpit seem to have stretched out looks weird. now I have lots of extra skin under my arms. the skin on the undersides of my arms looks like cellulite and it is moving all down my arms and working its way to the front. my Dr says it is muscle lost due to inactivity. Every time I any sort of upper body exercise my chest seems to get tighter. I wear loose fitting bras now because I seem to swell during the day and in the evening I can hardly sit. I am going to my dr again on friday. I really need a diagnoses as I Carnot get any type of compression garments with out a prescription and I certainly do not want to waste money even though my husbands insurance covers up to 250.My dr does not seem to know what is happening because there is not severe swelling my arms just look bigger that before surgery.

I do not know if this is related to my reconstruction or not. no one seems to know I have posted on the reconstruction forum to see if anyone else had has this kind of problem..

I know that I am at risk because I have bilateral surgery. Both arms look the same though.

Laura.

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

    Laura, you can have breast/chest lymphedema without having arm lymphedema, and it does sound like that's something you need to have evaluated by a well-qualified lymphedema therapist. It's called "truncal lymphedema," and many doctors don't recognize it or know how to get their patients treatment, so you will probably need to bring it up. A lymphedema therapist would be able to tell from a simple physical exam; you need a referral from any doctor on your team to see one for an evaluation.

    That said, not every lymphedema therapist has a lot of experience with truncal lymphedema, so call and ask before you go.

    As for your arms, none of what you describe is typical of lymphedema, but the fear of lymphedema can keep us from using our arms, so that becomes a problem of weakened muscles. With the help of a good lymphedema therapist you will be able to get the lymphedema risk reduction information you need and even design an exercise program that will get your arms back into shape without risking swelling.Smile

    Here's how to find a well-trained therapist near you:
    http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm

    Do try ALL the links on the Therapist Locator, and call and talk to them before you go.

    Here's a page about breast/chest lymphedema:
    http://www.stepup-speakout.org/breast_chest_trunckal_lymphedema.htm

    At the bottom of that page are links to pages about compression bras, camis, shapers and binders that may make you more comfortable until you can get help. Some are not expensive and are available locally -- might be worth a try while you're waiting.

    And finally, here's essential information for your doctors about lymphedema. Might be helpful to pass along to them:
    http://www.stepup-speakout.org/essential%20informat%20for%20healthcare%20providers.htm

    Do let us know what you discover! Gentle hugs,
    Binney

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  • kcshreve
    kcshreve Member Posts: 1,148
    edited March 2011

    Laura,  I had a bilateral mastectomy, too, and my chest gets pretty tight.  It's been helpful to do regular stretches, but the progress has been slow.  I use a door frame to stretch out my arms, placing my hands/arms at different heights, then leaning into the door frame.  My range has increased quite a bit and the tightness has lessened.  I do have truncal LE, but I think my chest tightness is probably scar tissue, which does tend to tighten over time and needs to be stretched.  My doctors knew next to nothing about LE, which was unhelpful. An LE therapist is the way to go, for sure.  Keep the dialogue going until you can figure out what's going on with your situation.  

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  • lauralu
    lauralu Member Posts: 100
    edited April 2011

    Thanks for the replies to my Post..I have the names of two therapist in this area

    . I am having my implants removed don't know when but it was a decision I had to make sooner of later.My Dr says it is probably best as there is likely a lot of scar tissue in the area.

    Thanks Binney for all the excellent information.

    Laura

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