why did you get your first sleeve

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melmcbee
melmcbee Member Posts: 1,119
edited June 2014 in Lymphedema
why did you get your first sleeve
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  • melmcbee
    melmcbee Member Posts: 1,119
    edited August 2012

    I am just wondering how many people got compression sleeves or gloves before they got lymphedema or is it the norm to not get it for prevention. I am having a time finding someone to fit a sleeve for me without having lymphedema. I am being told that I could just order one off the rack but to be fitted for one they usually measure the arm to see what the compression should be. And will insurance pay for it for prevention. I dont have lymphedema I am still swollen and in pain from the last 2 surgeries that I had. I hope this isnt a dumb question and thanks for any advice.

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  • BoobsinaBox
    BoobsinaBox Member Posts: 550
    edited August 2012

    Melmcbee,

    Questions are the way we learn. They and we are not dumb, so ask away! I got my sleeves and gloves about a year and a half after my bilateral mast. I had to fly to a grandson's wedding, and I believe it's important to wear compression for flying, as a precaution. I later realized I have stage 0 LE, which means the swelling is not large and it seems to go away after treatment (MLD, lots of water, elevation, sleeves and wearing the sleeves and gloves during the day). I got the prescription and went to a fitter and was measured. Almost everything I know about LE I learned here, and much of it comes from reading every thread every day. I have been doing that since I discovered a year after my surgery that my surgeon had removed 12 nodes on the left and 9 on the right, despite having told me he "only removed one or two with the breast tissue". This LE board is where I learned how to care for myself, before I got an LE therapist. I recommend reading it thoroughly! Good luck with getting the garments you need!

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  • Lee64
    Lee64 Member Posts: 184
    edited August 2012

    I was fitted for a sleeve before I started rads. The LE therapist told me to wear it when doing repetitive motions with that arm or when lifting more than 10 lbs. Also to wear it one hour before flying and keep it on one hour after landing. I haven't had any problems so far.

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  • melmcbee
    melmcbee Member Posts: 1,119
    edited August 2012

    Thanks Boobsinabox (love that name) and Lee. That is exactly what I needed to hear. I was concerned because I have the usual pain and swelling from the mastectomy in my arm and then a month later the dissection was done so I had worse arm pain and swelling from that. I basically feel like a blow-up doll. gained10-15lbs, look pregnant and my arms feel like they have doubled in size. lol. Pin is getting better but I want to put the sleeve on hold till I deal with the chemo and maybe som physical therapy. Hugs to all.

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  • lago
    lago Member Posts: 17,186
    edited August 2012

    My BS gave me a prescription for them after surgery and before I started chemo. He gave me some information which included wearing the sleeve(s) for flying if you are at risk… and how wearing them for flying is controversial if you don't have symptoms.

    After my 4th TX I was officially diagnosed with LE in my left arm (10 nodes). I wear the sleeve all the time on the left and also on the right when flying and doing upper body strength training. (Currently 7 & 10 lb weights but do 30 reps of many exercises)

    I do have off the shelf. I was measured at the place I bought them. I also got the glove(s). The gloves actually fit well except my fingers are too long. Currently I don't wear the glove per my LE MD. I don't have swelling there. I've worn the glove maybe once this past year. My LE MD said most people who need gloves need custom. Gauntlets aren't as challenging though.

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  • vlnrph
    vlnrph Member Posts: 1,632
    edited August 2012

    I rec'd my custom sleeve during chemo prior to any sign of LE, anticipating the need to wear it during airplane flights. Before we left on our trip, I swelled and had to use it therapeutically. Upon return, and after some weeks of night wrapping, I was remeasured and could now buy the in-stock size! Insurance paid the majority of the cost, also for both gauntlet & glove.

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited August 2012

    I originally thought I would eventually just need sleeves/gauntlets for flying after BMX, but during chemo my complete AND side swelled (along with the rest of me) and I now have stage 1 LE.  I can wear off the shelf and I do have gauntlets.  I wear both arms when I fly due to bi-lat SNB.

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