truncal lymphedema

[cuccaba]

I'm new to this site. I hope someone has suggestions for me. I have been treated for many months for lymphedema of my arm. It seems as if I have truncal lymphedema and my therapist suggested the Bellise bra. When I went for a fitting I was amazed that it had no cups. I don't know how a big breasted woman can wear this bra. Does anyone have any suggestions on how I can get compression for my upper back on the side. Sports bras don't get to cover the spot that effects me.

[tinabudde]

No cups on the Bellise Bra? That's odd. We have a display in my therapists office and they have cups, nothing with underwire or that would irritate but they have cups.

there are other compression type wraps that fit around similiar to a back support that I've seen in magazines in her office. I can check and get back to you if you like.

Tina:o

[Emily P. Bees]

I’d agree that the Bellise bra doesn’t really have “cups” – it comes in sizes like 34 C/D and is more like an oversized athletic bra. I have them. The “surprise” for me when I got fitted was learning that you wear them with big pads inside to put pressure on your swollen areas. Getting the right size and shape pads can be an adventure. Wearing a bra that’s heavily padded in many of the wrong places also seems quite bizarre. Frankly, I’ve taken to padding both sides symmetrically even though only one side needs it – at least I’m not lopsided that way.

The lack of cups doesn’t mean there’s a lack of support – you’re strapped in with this contraption believe me – no wiggle room.

My problem with the Bellise is that my LE comes up under the armpit right up to the area of the axillary nodes. The bra doesn’t really come that high up under my arm. If I don’t adjust it to cover that area, the bra just pushes all the fluid up into that uncovered area. I can “adjust” it to cover that area by really really shortening the shoulder straps. The problem is then it not only has no real cups but the zipper up the front buckles outward big time. Thus, instead of looking like I’ve got maybe boobs in an athletic bra – it looks more like I’ve got one gigantic loaf of Italian bread strapped to my chest with the highest point in the middle of my chest – right where the cleavage ought to be. - - - Slightly misshapen is one thing, this is more like the entirely deformed look.

Soooo – yes I do wear it - - - when I’m feeling more swollen than usual, when I’m having a harder time controlling things other ways - - when I fly, etc. – but only under large baggy clothing. It has made it through airport metal detectors every time so far.

Meantime, I’m working on designing myself a different garment – hoping for something along the lines of a cross between a long cross-over bra with the band lower than usual and a dance leotard w/o sleeves. I’m no seamstress, but so far the badly sewn prototypes are better than the Bellise as far as I’m concerned – and when I finally get it right, I’ll get someone who knows what they’re doing to sew me up a couple.

Fortunately, my LE while bothersome is not disastrously huge and so far I’m able to control it pretty well with exercise, self-massage, water aerobics, kinesio tape and a few other tricks I’ve learned along the way.

The long & the short of it is: I’m really glad the Bellise bra is around – there certainly is a need for compression bras – and I’ve been grateful to have it on many occasions. But just like regular bras – what works for one person may be all wrong for another and I think we’ve got a long way to go before we get an adequate selection of really good compression bras that work for all of us.

[Cassie]

cuccuba and tina and Emily, hello!

I too have tried the Bellisse bra and found it doesn't work for the spots I need (even with padding). But I will say the fabric is so soft and feels great -- I was disappointed that it didn't work. Jobst and Bio-Concepts will both make custom vests, out of a thin fabric like the sleeves. These can be made to fit your own breasts (if you have them) so you still have a cleavage. They can be made with short sleeves or no sleeves. (If you're looking into this Bio-Con is probably considerably cheaper than Jobst, but be sure to shop around). Downside is (for me at least) they were majorly uncomfortable; even a little hard to breathe, but I have some other problems that probably made that worse. (They're like burn vests, if you've ever seen those.) They work really well under clothes, and they did work for me in terms of controlling swelling. For those extra spots where you need a bit more compression (especially if you've overdone it, y'know?) I found "chocolate bars" slipped into a stockinette cover worked really well and are thin enough not to make you look misshapen. They might work under the Bellisse as well, instead of the Jovi-pak pads, but I don't know that. (In case you aren't familiar with chocolate bars, they're thin, tough foam cut in small rectangles and glued to a backing fabric. The rectangles arranged in blocks look like Hershey bars, except they're off-white. I think you can get them at Bandagesplus.)

A friend with breast LE uses Nancy Ganz camisoles, which she buys very reasonably at TJ Maxx, but unfortunately we don't have that store here and I haven't found the camisoles yet. Still looking!

But finally, I have to say that I've very recently gotten a new product (from an established garment company) that is wonderfully comfortable -- holds me instead of squeezing me to death, does an excellent job of controlling the swelling without any extra padding of any kind -- but it's still in the early design stages, so I can't really explain it to you or steer you in that direction. But I do so want you to know that there are good people out there who realize what we're going through with this and are working with real expertise to bring us some much-needed relief. Trust me, I'll let you know about it the moment it's available, but couldn't resist offering at least this hope. Hang in there!

And Emily, as soon as you work it out do let us know, okay? I have another friend with breast LE who's working on her own design too. Maybe all of us together can solve this mess!
Cassie