Weird Arm Size?

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nye1980
nye1980 Member Posts: 69
edited March 2017 in Lymphedema

I am starting to make myself a little crazy. I had 28 nodes removed back in June of last year and have been fine so far. I will be flying to the States from Thailand in a few weeks and have been trying to find a compression sleeve. There are no lymphedema specialists here and every sleeve distributor I have found don't have sleeves in my size. I thought I'd scored with a company that imported sleeves from Germany, but I can't even get it on and it hurt so bad that it just can't be right. I tried to order on LympheDIVAs, but even their app said I had to contact them because they didn't have the proper sizing. (I have a larger upper arm in proportion to my elbow, wrist, and palm.) I don't know what to do. When I'm in the States I can see someone, but I have no resources and no options here. I have no one to teach me to properly wrap. I am feeling so scared. I'm going to end up having to go without and make sure to do MLD and move as much as I can and stay hydrated and hope for the best. Anyone have any other ideas?

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  • Kicks
    Kicks Member Posts: 4,131
    edited March 2017

    Not sure but do you have a DX of LE? If so whoever you got the DX from should be able to help you.

    There are quite a few who do not correctly fit the sizes of garments that are OTS (Off The Shelf) for various reasons. For those of us who do not fall into the OTS 'norm' we have to do Custom garments. I fall into that area. Custom garments are more pricey but sometimes there are no other options.

    For me, I have to have low level compression (higher quickly worsens my LE) and though I'm basically 'average' (5'6", 130 lbs) but I have very long arms (and legs) and they do not make OTS sleeves that are long enough for my measurements in the compression level I have to have. I have syndactyl (webbed fingers) so OTS gloves literally cut into the webbing between fingers (very painful) and leaves open sores - not a good idea when dealing with LE.

    Perhaps you could call the Facility/LET you will be seeing while in the States and ask for input/suggestions until you will be seen. Perhaps you could also check with Medical Supply stores in the town you're going to or Mastectomy Salons in the town if it's a larger town that has one/some.

    Have you looked into a night sleeve? Could be used for flights. Mine is a Solaris.

    Wrapping is not only knowing how but also having the right materials to use.

    Do the best you can.

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  • nye1980
    nye1980 Member Posts: 69
    edited March 2017

    No, I have not been diagnosed. I just thought it was a good idea to wear one preventively?

    I've gone back and forth with the distributor of the German sleeve and if it fits my upper arm, it's inches loose at my hand and wrist. So I don't think that makes any sense. Ultimately I might have to just go without and hope for the best. I'll have way more options when I'm in the States (Seattle).

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  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited March 2017

    Hi!

    There's actually quite a bit of debate about whether or not someone who is only at risk for LE should wear a sleeve as a preventive measure in a plane. Some LE therapists say yes; some say no. I have also had several lymph nodes removed (20 in total), and I've never worn a sleeve to fly. I still haven't developed LE. Best wishes, whatever you decide!

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  • hugz4u
    hugz4u Member Posts: 2,781
    edited March 2017

    Yes and then there are others here that did get le due to elevation on flight. Have you seen what a water bottle does in flight. Yikes... I hope that's not my arm. Yup everyone makes their own decisions on flying and it should be that way. Tough ain't it,this le beast!

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