Using compression garments as needed?

Options
suzanne2
suzanne2 Member Posts: 8
edited June 2014 in Lymphedema
For those of you who use a sleeve & glove/gauntlet as needed (e.g. when exercising?), what was your initial diagnosis? Mild lymphedema? I am asking because there seems to be some confusion in my case whether I need to wear a glove/sleeve everyday or not.... 

Comments

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

    Suzanne, I wear compression garments as needed--my hand swelled up three weeks post op and prior to rads. At times I need to wear a glove every day, but often I can go without. There were periods when  sleeve was needed, due to forearm swelling, but that has gone away.

    I do wrap every night. I know that seems like "overkill" if I don't need daytime compression, but it's what keeps me from needing it.

    I spoke to a surgeon who uses bioimpedance regularly in his practice to measure fluid in patients' arms and breasts, and he also uses it to check how quickly their arms reaccumulate fluid without day and/or night compression.

    Wrapping reduces volume, compression garments maintain volume reduction.

    That said, some women only need daytime compression, and their need for it varies.

    I found I needed it a lot at the beginning, and after starting a job that required a lot of use of my hand and arm, and after my hand fracture.

    Kira 

  • Member_of_the_Club
    Member_of_the_Club Member Posts: 3,646
    edited September 2011

    I'm pretty mild and wear them if I run, fly, exercise or am outside for a long time on a hot day.

  • NatsFan
    NatsFan Member Posts: 3,745
    edited September 2011

    Suzanne - I'm one of the lucky ones - I have early stage (Stage I) arm and truncal LE and only wear my compression sleeve and gauntlet as needed. I also rarely need to wrap, but I do have a Solaris "oven mitt" night garment I will wear on occasion when my measurements are up or when I think I might have overdone it.

    I am a fanatic about wearing my compression when I do weights/resistance, yoga, or other exercises that stress the arm.  I also wear it when I do any work that involves using the arm, e.g, housework, mowing the lawn, snow shoveling, gardening, using a chain saw, lugging heavy things, etc. I let my dh bring in heavy grocery bags and do other heavy lifting.  I let others at work put a new water bottle on the water dispenser.  And I no longer lift heavy computer equipment (I'm in IT) - I let the young IT Techs do that lugging!  Wink

    I also do an abbreviated MLD every morning, as well as the initial 15 minutes of the Lebed exercises. I am also a fan of wearing an underarmor garment turned inside out at night if my trunk seems "poufy" from my truncal LE.  

    I also measure my arm at least a few times a month to monitor it and track those measurements on a spreadsheet my wonderful dh developed for me.  I also measure if I've done any unusual activity.  If the measurements starts going up, or if I've stressed my arm in any other way, I immediately go into what I call my "full court press" - I compress 24/7 - wearing the sleeve/gauntlet during the day and the Solaris at night. I'll do that for a few days until it's back to normal.

    It sounds like a lot of work, but once you figure out what works for you, it's really not that bad.  I have learned enough from this board that it's critical to acknowledge LE, and learn to manage it.  The worst thing you can do is pretend it's not there.  Too many ladies here ended up with later stage LE because their doctors pretended LE is rare or non-existant.  I have learned from the wonderful women here that if you're lucky enough to be dx with early stage, you want to do everything you can to remain at early stage LE.  

    Good luck!

  • SpecialK
    SpecialK Member Posts: 16,486
    edited September 2011

    I have a question for the ladies with experience - I have been receiving PT (from a certified LE therapist) for about 6 weeks and it is now time for me to get the sleeve/glove/gauntlet, or whatever combination.  My PT people do not do the fitting, they have referred me to a durable medical device source.  I need a prescription for this, but who do I get it from - MO or BS?  What do they specify it for - or does the medical device source determine that?  I need this for occasional use - exercise, flying, etc.  Also, I had a BMX with a two node SNB on the left, a one node SNB on the right (cancer side) then 5 weeks later AND on the right with 11 more nodes.  I was sent to PT for cording/axillary web that started about 4 months after the AND but in the middle of chemo.  Taxotere seems to have triggered swelling and pain, which has now resolved.  It seems to me that I need both arms, correct?

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

    SpecialK, I'm going to ask Binney to answer this--the one side, with cording, swelling and pain and 14 nodes out is clearly indicated for compression garments.

    I'm assuming the other side is just "at risk"--in that case, it can be debatable, but you want to make sure you get well fitting compression garments, as poorly fitting ones can cause problems

    Any physician can write the script: they have to write: Lymphedema after breast cancer #457.1, dispense 2 compression sleeves for each arm and 2 compression gloves/gauntlets for each hand. Refill as needed.

    There are different levels of compression: very low, 15-20, only made by Jobst, just for prevention on flights, etc, class 1 20-30 (most common) and class 2 30-40mm. And these are US compression classes, just to make it more complicated.

    Your LE therapist can suggest and assist the DME person in what she feels is needed.

    Most insurance covers 80%of 2 garments/limb every 6 months.

    Here's a link to garment info:

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

    I get my scripts from my primary care doctor.

    Kira 

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

    SpecialK, you're right that both arms are at risk, so risk reduction is definitely called for. The issue is to make sure the fit is good so there's no constriction anywhere. Once you have them, check with your therapist to be sure the fit is right, then start gradually with them (no more than an hour the first time you have them on) to be sure they're not causing redness, aching, purple fingertips(Tongue out) or chafing.

    Any doctor on your team can write the prescriptions. I get mine from my MO. My therapist, like yours, doesn't do the fitting herself, but it's up to her to decide on the compression level and any other special considerations. If you're not buying custom garments, don't let the DME company sell you just whatever they've got on their shelf -- if you don't like the fit and they don't have the size/style you need, they should order it, not push off the wrong garment on you. (Voice of sad experience!Undecided) Ask you therapist if there's a fitter she trusts at your DME supplier.

    Let us know how it goes. Be well!
    Binney

  • SpecialK
    SpecialK Member Posts: 16,486
    edited September 2011

    binney and kira - thanks!  I knew you would come by and offer help - I so appreciate it!  I went to the MO today for Herceptin #11 and did get a prescription from the office.  It is more generic but does indicate bi-lateral need, so that was good.  My next visit is to the durable medical device people and if they need to fine tune the scrip, I can go back and have them insert the proper wording.  I was originally referred for this to Sports Medicine at the Univ of So Florida.  When I called and asked if they were lymph certified and got a no, I went back to the MO office and the girls at the front desk deleted USF and put in Moffitt Cancer Center Rehab for me because I called to find out if they were LE cert., and of course they were.  Gotta work the system, right?

    I had already called my insurance (military) and the person I spoke with didn't know how to look up the sleeves/gloves/etc. so after I visit the durable medical device peeps they can give me the codes for the garments and then the ins. can look it up.  The MO office (nurse) wasn't sure if they would pay for the left arm sleeve, but that is why I had her put bi-lateral on the scrip. We shall see! I will keep you posted. Thanks again for the assist!

  • inspiewriter
    inspiewriter Member Posts: 876
    edited September 2011

    I found that I needed a certificate every year or so from my doc stating that the garments were needed for a medical reason.  (As if the LE might suddenly disappear between garment orders. As if!)

    Mine is mild and for a few years I got away with not wearing daily sleeve/glove, but now, even if I feel it's not really needed I wear anyway for several reasons.

    --my LE arm is still larger and whiter than the other.

    --I feel the garments protect me is some ways, like from a papercut. And from other people bumping me--they notice the garments and seem to steer clear. 

Categories