Shirt design for Lymphedema

GmaFoley

I can't find where you order the vest.



I found the amoena Hannah 2860 compression cami. I had to wrap the shoulder straps to make them thicker . I will be putting a jovi pak lumpectomy pad in it once I can afford it. Seems to be best options for me.

hugz4u

Carol, thx for keeping up with the compression tees, your a true doll! I never did hear back from UNDERARMOUR.

carol57

KS1, I poked around a bit to see if I could find an online dealer with that Juzo vest, hoping to find a price or price estimate.  I couldn't find it anywhere.  My educated guess is that we're talking about a garment that's $100 at minimum.  If anyone comes up with some price information, that would be very good to know.

cfdr

If you go to the Dealer Locator at juzousa.com, you can enter your zip code and find nearby suppliers. I called one near me, and the woman I talked to was unfamiliar with the vest but did find it in the Juzo catalog. She said it is a custom order: you have to be measured for it. She is calling Juzo and will get back to me with a price.

cfdr

Heard back from my local supplier: $471.99!!!!! And I thought the Belisse bra was expensive!! And it goes up if you need pockets for a prosthesis. Ouch.

GmaFoley

Once you do a custom fit - price goes up all over..

carol57

cfdr, thank you so much for investigating! 

All the more reason to keep working with GoAthletics to figure out a way to make the compression shirts more LE friendly. I think they're considering a range of off-the-shelf sizes, and ultimately custom sizing as well, and in my wildest dreams I cannot imagine that the price could be in the hundreds of dollars per shirt. Granted that the Juzo vest is custom sized, and the options for sleeve/no sleeve is interesting, but really..one has to wonder why such a simple garment should be so pricey. It cannot be gradient compression, which is one reason that sleeves are so costly, so I really do wonder why a vest made of compression fabric can be that expensive to make.  At least the Belisse bra has some fancy shaping-and-stitching to it!

hugz4u

The reason it is so expensive is because of one word.....GREED.

Yes it's true, custom garments are more work to make and design which costs the manufacturer more.  But when it comes to the ready made garments I bet it doesn't cost that much.  Robotic machines do most of the work and maybe they bring in cheap labor depending which country is making them. That said I do realize that a lot of them are made in Germany and not China.  Still....I feel raked over when buying these garments and we have no choice. grrrrr... opps wrong thread.

Journey

Carol - YEAH!!! I am so, so, so very happy to hear that they are really looking into this!  Thank you for being the liaison.

As the weather is getting warmer and the turtlenecks get packed away those lower necklines sans logo are going to get more and more important to us with trunk and shoulder LE.

Yes Ladies - lets keep talking about the SHIRT design.  Hate to be such a B##ch about keeping this thread on topic but can we please?

Gingerbrew

I have a question that shows how little I know about the subject. How can you tell the difference between truncal LE and just weight put on after BC?  I gained 50 pounds after getting and being treated for BC. I am nearly 6' tall so it is more spread out but I am carry weight in my trunk, especially belly area like never before in my life.

Thanks Ginger

hugz4u

Gingerbrew. No LE question is a silly question because LE presents so differently in each person. The very best thing you can do is to become educated and this is a good place to start. Welcome. Also go to the website stepup-speakout.org where some girls from these threads created a excellent site on lymphedema. There you can find a qualifed LE therapist which is good because you should go for a intial evaluation, get measured and keep a eye on your surgery area and lymph system.It if far better and less costly to prevent LE than treat it. Early stage is reversable late stage not.  

For my my truncal about a year before I contracted it I noticed at the back of my pit a internal itch. I did scratch but it didn't relieve it. It would only itch every couple months for a couple days at a time. Finally I tipped the scale by wearing a tight jogger bra that cut me at the back too much. I was sitting in a seminar all day also with that jogger bra and that finished me off, especially since I had a 4 hour drive after the seminar. Since then I have a full feeling at the back of my pit almost daily. It gets worse by night or if I sit a long period of time.

On affected side, look in the mirror at the back of your pit in the morn first thing and study your trunk for size then by night look again. You may be a bit bigger. Perhaps larger love handles than the other side. This could be a truncal fluid accumulating. You may have a feeling that a rubbery egg is placed behind your armpit also.

Hopefully other girls will weigh in on symptoms they experience. Why not start a thread with your questions also.

Cindyl

Argh this thread fell out of my favorites...  I'm very interested in all these issues.  I just ordered one of these... I'll let you all know if it works for me.

http://www.amazon.com/gp/product/B005DZPH2I/ref=oh_details_o00_s00_i00?ie=UTF8&psc=1

purple32

I have not seen this before kS1.  Vest with attached arm sleeves?!   Seems so odd.  Seems very hard to believe the sleeves would be ' right' and the vest would be too.  Besides, two sleeves ?  OK, now I am thinking the sleeves are NON compression-  so, that being the case, this would  be good strictly for truncal.

Of course I see there is the sleeveless too.  I dunno'.

Binney4

Purple, there are a number of us with bilateral LE, so the vest-with-two-sleeves makes sense.

I did have a Juzo custom truncal garment several years ago (and hated it--we could hope this version is better, but I wouldn't count on it.) The custom truncal garments are very exactingly fitted--think burn garment--so that the compression is even over every dip and curve. If you have one breast, or breasts of two different sizes, the garment fits each exactly. There is also a built-in separation between two breasts, so there's compression in the cleavage area as well. As you all probably have experienced, that's impossible without very careful overall fit. That said, it doesn't (in my opinion anyway) result in a comfortable garment, even if it's an efficient one. I also found it very hard to breathe in, but I'm sensitive to compression so that's probably an individual thing.

At any rate, the Helastic is a thick fabric and too agressive for me--my custom vest was a lighter fabric. If anyone tries it (either you're independently wealthy or you have excellent insurance), do please let us know what you think.

When we're thinking of a shirt design, we're not talking about exact fit. We're willing to use Swell Spots as needed to help us as individuals work out our own perfect solution. So I don't think there's any comparison between a custom compression vest and an off-the-shelf compression shirt. And for my money, the shirt has a far better chance of being comfortable as well as effective. JMHO
Be well,
Binney

carol57

Binney, if you order the vest with sleeves, do you think the sleeves have gradient compression?  Just wondering.

KS1

I assumed that the sleeves on the juzo vest would have graduated compression, so all one would have to do is wear a glove.  If $500 is the price with two graduated pressure sleeves, then it wouldn't be as outrageously priced.  But if it is made of the Expert fabric, it sounds pretty unpleasant.  

Right now, I am doing well with an inside-out Memoi short sleeve cami.  My one complaint is the Memoi seams are thick.  Radiation and many procedures has left the skin in my axilla tight and very friable.   After wearing the Memoi for about a week, an area opened up and started weeping, so I started wearing a silicon "petal" under the axilla and around the back to provide further protection from the seams.  So far, it seems to be working and the area is healing up. 

The gel petal isn't a prosthesis ... but rather is a very thin piece of silicone.  Here's the URL in case you are interested:

http://www.easyliner.com/alps-breastform/index.html

KS1

Cindyl

Cooled in the refrigerator?  Now that sounds interesting, as hot flash season starts to ramp up again. 

purple32

Purple, there are a number of us with bilateral LE,

Of course there are!

What was I thinking? ooops.
Well, the sounds of the fit and fabric make that thing sound more like a straight jacket than anything else !

In looking at the short sleeve shirt Cindyl posted from amaxon above, I love the price, but I wonder about fit.  I looked at the size chart, but it didnt seem to ' size out' right for me.
Cindy ...make I ask, if you are a med. blouse, will you get a M in this? If an L, then  size large ...or are you going up or down 1 size ?
THX

Cindyl

I ordered the size I usually wear.  (In an under armour top, I can order my normal size and get good compression in the "compression" styles.  If I want to try  something that comes in a "fitted" cut I go down a size and it's usually OK. ) If I need to I can return this and try again in a size smaller.  I'll let you know how it goes.

GmaFoley

Good to know Cindy - thanks for the info

carol57

Cindy, let us know how the sleeves fit, too. The online photo looks to me like they may be short enough to cut into the armpit, which is a problem I have with UA women's shirts.  If this shirt's sleeves work well, that would be good to know.

GmaFoley

I surprised myself today. Tried something new.. I put a light weight cotton stretch tank top on, then put my sports bra over it making sure there were no creases. It actually compressed my breast enough to unswell a bit. It's a start. I had to realize that compression isn't comfortable and I needed to buck up and do what helps the swell.

ahdjdbcjdjdbkf

I wonder if Lymphedivas would consider expanding their options to garments?

ahdjdbcjdjdbkf

I bought this today. I really like anything that looks sporty! http://cgi.ebay.com/ws/eBayISAPI.dll?ViewItemVersion&view=all&item=160704509889&tid=900139136006&ssPageName=ADME:X:UPICB:US:1123

purple32

Maria

I wouldnt rule that out at all for the future, but I know they are currently busy designing a glove.

Please check out  the GLOVES and SLEEVES thread for the latest on their new spring line and some exciting news.

Cindyl

http://www.underarmour.com/shop/us/en/mens-heatgear-12-sleeve-compression-t/pcid1210303-654

Hey look! Under Armour has a men's shirt with longer sleeves...

They also have one in "boys" that might work for some of you who need smaller sizes...

http://www.underarmour.com/shop/us/en/boys-heatgear-12-sleeve-t/pcid1210851-410

carol57

Thanks for sharing, Cindy.  I think that youth shirt is 'fitted' but not 'compression' wear.

One of my compression shirts has raglan sleeves like the one you linked to, and they are very comfortable--not cutting at the axilla at all.  I do have the impression that the chest is not as tight on that shirt, compared to the comparable one with traditional set-in sleeves. But that's just one manufacturer, and it's not possible to say if the same would be true in another maker's shirt, or even the same shirt on a different person. What we need is a store that stocks the full lines of compression and shapewear, from all makers, sorta like the compression gear equivalent of Sephora or Ulta. Then we could try on to our heart's content and find what works!  (I'll keep dreaming.)

Beatmon

I agree with that wonderful idea. I am tired of the zipper showing through my clothes with the Bellisse. I have 3 spanx and one UA, but I am looking for something with strong compression and no sleeves. I ordered a new men's top on amazon with 25% spandex but it hasn't arrived yet. I would appreciate any suggestions.

carol57

This is all so frustrating, isn't it?  The folks at Go Athletics are still working on modifications of their compression shirts for us. They were kind to send me a note a few days ago to explain that they're working on their seasonal catalog offerings and have not forgotten us. I have some samples they sent for me to comment on the compression fabric (which are great) and I do believe there will be more progress on this soon!

Cindyl

The Eastbay Compression tops have arrived.  I'm comparing them to  Under Armor shirts of a similar style.

White is the UA shirt.  Navy is the Eastbay.

They are both xl.  Sizes are very close.  Sleeves are close to the same length but the East Bay sleeves are a good 3/4 inch wider and not so tight at the axilla.  V Neck or the East Bay is higher than the UA.  No unsightly logo at the neckline.  East Bay logo is at the hip.  Seems are serged flat.  It seems to me that the Eastbay fabric is slightly heavier and slightly less stretchy.

What else can I tell you about it?