Shirt design for Lymphedema

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  • glennie19
    glennie19 Member Posts: 6,398
    edited September 2014


    Binney, the placement makes sense,, when I wear the compression bra, I have the swell spot peeking above the bra line under the arm. That's what my therapist told me to do.  I don't know if she has ever made a custom chip bag, I will have to ask her.  After I recup from my HX,, I will persue this issue some more. I want to maintain!!

    Not sure why it is so difficult.  I'm reaching out to some pharmacist friends who have worked down in Orlando,, to see if they have heard anything about the LE trained MD that I found.  I really wouldn't mind seeing her for a consult, if it would be helpful.

  • Binney4
    Binney4 Member Posts: 8,609
    edited September 2014

    Glennie, it may or may not be helpful. Do lots more research before committing to that. The real treatment experts with LE are the well-trained and committed therapists, so maybe research those close to home first. The LE community is fairly small, so interconnections are common and helpful in keeping good therapists up-to-date.

    When's the surgery again?

    Hugs,
    Binney

  • glennie19
    glennie19 Member Posts: 6,398
    edited September 2014


    My HX is Monday the 29th. 

    Locally there is only 2 people who are PT/CLT's,, and I had to jump thru a lot of insurance hoops to get to see one.  There are a few massage therapists who are CLT's, but they only do the MLD, and cannot give me advice on exercise, or compression or anything else.  (they have told me that).  So that's why I wondered if seeing an MD who is also a CLT,, could give me better guidance and instructions to bring home to the local PT/CLT for further help. My local therapist is great with the MLD and all,, but I've really had to do my own research with swell spots and so forth. She has been "impressed" with the things I've shown her.  (breast binder, etc)  And I feel like,,, I shouldn't be the one to have to find these things,, my therapist should be a bigger help!  (call me crazy)  Hence my reasoning with going elsewhere for a consult, at least.   Orlando is 2 hrs drive from me,, so it can not be a regular visit thing,, that's for sure!!

  • carol57
    carol57 Member Posts: 3,567
    edited September 2014

    glennie, we're all crazy, because the D-I-Y part of LE is making us all crazy.  Gosh, your surgery is coming up soon. You have a lot on your worry plate right now.

    binney, do the pockets really have to be a glove fit?  I wonder about a universal pocket that has rows of stitching, and we could remove a row or two depending on how deep in the pocket the chip bag needs to sit.  But I've not needed any swell spots to date, so I really don't know what I'm talking about.  Except the goofy one in the shape of a BC ribbon that I got when I was an LSAP participant at the NLN conference a couple of years ago.  I really could not for the life of me figure out how that thing could be of use, being such a strange shape.

  • carol57
    carol57 Member Posts: 3,567
    edited September 2014

    Oh, and Solaris and GO are neighbors, somewhat--Wisconsin and Minnesota.  Hmmm. But such a cooperative venture would only work if it makes financial sense for both of them, and I suspect that GO will need to sell some shirts before they might be interested in adding any complexity to the project.  They've done a lot on faith that 'we' really are a market and will try the shirts out.  But we can sure ask both companies to consider collaborating on a shirt with pockets meant to hold swell spots.

  • Jennie93
    Jennie93 Member Posts: 1,018
    edited September 2014

    I wonder if a material somewhat like suede would be good. Soft and non-slip. Anyone handy with sewing who could try the do-it-yourself approach?   I also wonder, if the shirt was snug enough, maybe the swell spots would stay in place without pockets? 

    Glennie, my LE therapist made mine herself. I don't know how common that is, but she had these sheets of foam in different thicknesses, and she just grabbed some scissors and eyeballed my swelling and went to work, snip snip, presto, I had several to try, various shapes & sizes.  The problem I had was, I was using a snug sport bra to try to hold them in place and it just didn't do the trick. Didn't stay in place. So I kinda gave up. Now that I'm thinking about it....  Has anyone tried some of that sticky tape that is meant for keeping clothes in place?  I don't mean sticking it to your skin!  But maybe to whatever garment you are wearing.

  • Journey
    Journey Member Posts: 905
    edited September 2014

    Just wanted to pipe in regarding a pocket in the underarm area...for those of us who don't need one there...wouldn't the stitching be an irritant?  My issue is the area between the shoulder blade and where the arm meets the torso, but I find a seam anywhere in the general area to be irritating.  So much so that I wear a t-shirt to bed most nights turned inside out.  Anyway - just another perspective...maybe the pocket version can be a completely different model offered in addition to the "regular" LE shirt?

  • carol57
    carol57 Member Posts: 3,567
    edited September 2014

    OK, I've read some great feedback here, and the ever on-the-ball Binney already sent me photos with her sizing/fit comments!  Madhatter, toomuch, doxie, and journey (whose shirt arrived while she was away, so I know comments are not ready just yet) -- some of you have my email, and if you don't, just PM me if you want to email photos.  If not, PM me with any additional comments, so I can gather all the feedback for Margaret at GO.  By the way, when I sent you the shirts, I had a note in there with her email address, but she let me know that she's having problems with that--it's been disabled for a while as her website is being revamped.  I have an alternate now, and when I hear from you with final shirt comments, I'll let you know how to reach her if you want to.

    Perhaps we can all wrap up our sizing feedback by this coming Friday, October 3?  Or Saturday, if you need some weekend time with the shirt?

    Thanks, everyone.  I'm still puzzling over ways to keep swell spots / chip bags in place under a compression tee, without creating more irritating seams or locking in places for the bags that limit placement options.  I had wondered about lining the shirt so the bags could go in between, but Binney pointed out that might make the garment too hot.  I haven't ruled that out--all the seams would be on the interior, which might have benefits, and GO makes some lovely travel shirts of a very lightweight and highly wicking material infused with silver to reduce odor. I wonder if it stretches enough to not interfere with the compression layer of a double-fabric shirt, and if it would limit the added heat.  I sure do not know, but I will be asking Margaret, the GO garment designer.  Brilliant ideas from all of you are most welcome!

  • doxie
    doxie Member Posts: 1,455
    edited September 2014

    I'll be sending photos and comments soon.  My daughter took the shots an hour ago.  I put her in the shirt to show how it fits a smaller "small."  Took photos of these too.

  • carol57
    carol57 Member Posts: 3,567
    edited September 2014
  • kcshreve
    kcshreve Member Posts: 1,148
    edited September 2014

    Carol,  Are they making an XL or XXL?  I need to replace my UA's soon.  Looks like I'll be a larger size, even though in UA I'm wearing a Med.  In regular clothing I tend to wear an XL.  Are these shirts wicking and long sleeved?

  • carol57
    carol57 Member Posts: 3,567
    edited September 2014

    KC, the shirts in design stage now are short-sleeve, to avoid double compression over an LE sleeve.  The fabric is wicking.  I imagine that GO will eventually make a long-sleeve version if there's some demand for it, and I am sure that an XL is on the agenda.  The people there are great, so I have my fingers crossed that they will be able to add sizes and some basic features like long sleeves without too much ado.

  • JWoo
    JWoo Member Posts: 1,171
    edited September 2014

    Carol if you still need someone to test the large- i can

  • carol57
    carol57 Member Posts: 3,567
    edited September 2014

    jwoo, I did find someone, but thanks!

  • JWoo
    JWoo Member Posts: 1,171
    edited September 2014

    awesome- can't wait to see how they turn out!

  • toomuch
    toomuch Member Posts: 901
    edited October 2014

    I flew from the east coast to west coast wearing this shirt a week ago. I was able to wear it without a bra and I had absolutely no truncal swelling after the flight! This is the first time in almost 4 years that I was still comfortable when I reached my destination. This is definitely going to be my go to travel garment! Thanks Carol!

  • carol57
    carol57 Member Posts: 3,567
    edited November 2014

    toomuch, that's great news!  I've sent all the feedback to GO, and with luck there will be some shirts available for purchase on their site soon.  The feedback was mostly positive, with some concern that at the axilla and just under, not enough contact or compression and a tendency for some to swell there.  Also, I'm now hoping that GO will make a 'fashion' version that pares back the sleeve and lowers/widens the scoop neckline, for better ability to hide under other clothing. That version may not work for some who need compression higher up above the breasts, but it would be a great option for those of us who don't swell there.  I know that the wonderful garment designer at GO takes our needs and feedback seriously, and it would be a miracle to come up with a shirt that met everyone's needs 100%.  I'm so happy they're still working on this.  When the shirt makes it into the online store, I'll post that news here.

  • Meadow
    Meadow Member Posts: 2,007
    edited November 2014

    I have been reading through the thread with great interest. Thank you all so much in pursuing this project to reality!

  • JWoo
    JWoo Member Posts: 1,171
    edited November 2014

    Carol, 

    If I could make one suggestion for Go, it would be that they accept PayPal on their site. I can't be sure, but a few days after I ordered from them, I started getting a tone of fraud charges on my card. That was the only unusual purchase I had made at the time.  I really liked their shirts, but never heard back from them after I emailed them about this. Since you have an open dialog with them, could you possibly suggest PP as an option?

    Thanks!

  • carol57
    carol57 Member Posts: 3,567
    edited November 2014

    jwoo, that is horrible! I will check in with them and pass along your suggestion tomorrow.

  • spookybob
    spookybob Member Posts: 2
    edited November 2014

    Hello, ladies! I found this thread because I, too, have been desperately seeking compression shirts which meet all of my specific needs. Thank you all for keeping this going for so long! I wanted to add a few discoveries I've made on my own...

    First, Underworks Cotton-Spandex Compression T-shirt ( http://amzn.com/B00BDUQ3MU ) $16.99 on Amazon. I wear a medium normally and their medium fits well with the compression I expect. Cons: only comes in black and white. Pros: good compression, breathable fabric, short sleeves, approved by my physical therapist!

    Second, Sassybax Armed and Dangerous. I bought two on clearance at "The Pink Bra*". Again, medium fits well with adequate compression. Cons: Sleeves are a little longer (to contain back arm flab, i suppose) can be expensive, depending on where you find them, limited colors, hot and itchy after a long day. Pros: Great compression, very comfortable, no visible logo, can wear just like a cami under all my normal work clothes. 

    (* "The Pink Bra" is actually "Metro Medical". Good idea, but poor customer service -- had some issues with
    being allowed to order items out of stock. Seller substituted different
    colors, but had to go back and forth a bit to get that to happen.)

    Third, Tommy Copper Vitality Tank Top -- returned right away. Compression was minimal -- not meant for us. :-(

    Still searching, though. I want more colors; I want breathable cool-wear fabric; I want low necklines; and I want a reasonable price (sorry Wearease -- I can't spring for multiple $90 shirts!) Any more great finds out there?

  • carol57
    carol57 Member Posts: 3,567
    edited November 2014

    spookybob, those are some great suggestions, and you've found some resources that are new to me.  Thank you!  I'm with you on the $90 compression tee from Wearease.  Some women here have tried it and love it, and I'm sure that the Wearease folks have a sizable investment in developing that product.  But I just cannot bring myself to spend that much.

  • Meadow
    Meadow Member Posts: 2,007
    edited November 2014

    Thanks Spooky!

  • OneBadBoob
    OneBadBoob Member Posts: 1,386
    edited November 2014


    I guess I love the wearEase tee shirt so much that I find it worth the price.

  • JAN69
    JAN69 Member Posts: 947
    edited November 2014

    I love my WearEase T shirt too. It's hard for me to fork out that money, but considering all the money spent on trial and error with other compression garments, I think it is well worth the price. I'm off to check on Spookybob's suggestions.

  • carol57
    carol57 Member Posts: 3,567
    edited November 2014

    Jan, I sure do agree that the money spent on trial and error garments is enough to cover a few really good ones.  It's so frustrating!

    Good news from GO, the company that's developing a lymphedema-friendly compression tee.  The garment designer has made some design adjustments in response to our detailed testers' feedback.  I'm to receive a second round of garments and will send those to several of our testers, probably in about a week.  Won't it be great to have several CHOICES of compression shirts made to work for us? 

    Carol

  • glennie19
    glennie19 Member Posts: 6,398
    edited November 2014


    It will be wonderful,, I'm looking forward to it!

  • Meadow
    Meadow Member Posts: 2,007
    edited November 2014

    Thanks for the update Carol57

  • Journey
    Journey Member Posts: 905
    edited November 2014

    Following up with suggestions from Spookybob - I tired the Underworks shirt in both Light Cotton and Microfiber in Med. (I am 5'6" &weigh @140ish). The Microfiber was a no go - way too tight in all the wrong places. I kept the Light Cotton but have not worn that for any period of time yet. The Sassybox sleeves are way too tight and would cause a bad problem for me so back it went. I too have tried the Tommy Cooper but in the T-shirt and although I kept it it does not give any real compression so it's just a gym shirt for me. I will share that I have had some success with the SkinnyTees line. Currently I am using their "sports" bra, camis and cap sleeve shirts. They are not cheap (but affordable), and it only comes in one size. For me with my size arms, chest, back, etc it give me a nice gentle compression. If you are much smaller it may not work for you. Anyway, it looks nice and feels great for my needs - unless I am full blown and then I pull out the stronger stuff. JMO.

    Fingers crossed on the next GO offering!

  • doxie
    doxie Member Posts: 1,455
    edited December 2014

    Carol,

    I've tested the new GO LE shirt and it's about perfect for me. I'm a largish small and they got the fit right. Nice and firm, but not too contracting. Works really well for truncal LE with armpit involvement. Anyone else test theirs out?

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