Question about compression camisoles

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Cottontail
Cottontail Member Posts: 374
edited June 2014 in Lymphedema

I've been seeing my PT about my breast swelling and cording. At the first visit, she said the edema was being caused by scar adhesion from the ALND, and that it would be an "easy fix." Today was my fourth treatment, and the scar tissue is much more mobile, cording is nearly gone, and my pain level is down. Breast is still swollen, though. :/ (She's been doing a combination of scar massage, MLD, and taping.)



She had been telling me to wear a sport bra, for the compression. The trouble is that I'm having a particularly nasty eczema outbreak, with a very large patch in the crease beneath the swollen breast. I wear a soft t-shirt under my bra, but by the end of the week that spot is usually rubbed nearly raw.



Today she said she wants me to get fitted for a Belisse bra. I think my insurance will cover at least part of the cost. But, the fitters here are all open only when I'm at work. I'm running out of vacation time, and can't take time off for that. Of course, they're also appointment-only, so I couldn't go over there after this morning's PT. My next PT appointment isn't until Thursday next week. (If she'd mentioned this when I first saw her a week and a half ago....)



I thought I'd get a compression cami to tide me over. Spent over an hour at Kohl's after work. I left with two of these: http://www.kohls.com/upgrade/webstore/product_page.jsp?PRODUCT<>prd_id=845524892704950&amp;crosssell=true

They're only "light control," but will they be ok for now? I can't go to work without a bra (people have been fired for that in the past), but can't continue wearing the bras I have.



How are these things supposed to fit? I read some guidelines saying choose a size down from what you normally wear. I normally wear a women's M or L shirt, so I chose several size M camisoles, but couldn't get a single one of them on. Tried stepping into them, they wouldn't go over my hips. I couldn't get the size L firm support on very easily, either.





Will I never be able to wear a "normal" bra again? I mostly wear strappy dresses all summer long, those wont work over a cami or bra with wide straps. I also work in a warehouse, where I sweat a lot. I know my insurance won't pay for ten compression bras, and I can't wear the same one every day.

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  • carol57
    carol57 Member Posts: 3,567
    edited February 2013

    Cottontail, wow..you have some dilemmas to work on. I hate the part about not having easy access to the fitter, between your work hours and their appointment hours.  How incredibly frustrating.

    Here's a great resource, from a site created by LE patients. This link takes you to a discussion of using camis for compression, but do wander about the rest of the site, because I think you'll find other information that will be helpful. The women who run this site are sticklers for quality and accuracy of advice, so you can trust what you learn. 

    http://stepup-speakout.org/Compression_camisoles_lymphedema.htm

    I think some others will see your post and stop by with some additional suggestions for you.

    Carol

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  • itsjustme10
    itsjustme10 Member Posts: 796
    edited February 2013

    I was watching an infomercial the other day, and the people who make genie bras have come out with a cami that is basically a genie bra that comes down to your hips - here...

    http://www.camishaper.com/ 

    If nothing else, until you get things straightened out, technically you're wearing a bra - it won't work with strappy dresses, but it'll get you to the summer, and hopefully you will have found an answer by then (or maybe they'll come out with colors that you can pretend are tank tops under strappy dresses).

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  • M360
    M360 Member Posts: 356
    edited February 2013

    Cottontail,  I still have extreme swelling three year out.  I just had lung biopsy of breast cancer in lungs.  What I got years ago and they still work wonderfully is biking shirts from a bicycle shop.  They are compression at the max and they have all types without sleeves, short sleeves and long sleeves.   These tops are made so that your skins breathes and the wick moisture.  I too suffer from eczema from wearing sleeves or even with compression garments, so these bike shirts help from that occurring to,  I can't wear a bra to this day.  I have  only my right breast but edema in my back and left underarm comes from anything I do, like even a load of laundry.  My daughter went to a lymph-edema class and so she does massage daily.  What helps me keep moving is working out with a large exercise ball and stretching all the way back touching my palms to the floor.  It seems like I'm crying for the first 5 minutes but after that my muscles and tendons stretch and I'm able to add light weights 3lbs in each hand and do arm and backward on the ball exercise to use all those muscles along the chest, arm and back area.  I get such bad edema that it goes up my neck and into my face if I don't exercise every day.  I have had to take a break for a week after lung biopsy and the swelling is extreme.  I take furosimide to take fluid away as well as prednisone, but I prefer to exercise and have the massages to keep fluid from forming.  For me this is my life's cross to bear, there are many woman who have the same.  Doctors just don't tell you about all this ahead of time and that it will continue the rest of your life!

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  • Blessings2011
    Blessings2011 Member Posts: 4,276
    edited February 2013

    Cottontail - I am SO not an expert on LE, so hopefully the experts will be along shortly.

    I just wanted to share my story, and maybe some tips along the way.

    I had my BMX w/ SNB and expanders in December 2011, and my exchange to permanent implants in August 2012.

    As soon as I came out of surgery with the New Girls, it was obvious that Lefty was MUCH higher and bigger than Righty. The PS said it was "excess fluid from the pocket work he did".... and that it would "probably go away..."

    Well, both sides dropped and fluffed, and both implants settled nicely into the pockets... but Lefty still looked like a small animal trying to crawl over my shoulder.

    Five months later, nothing had changed, so I saw the hospital LE expert. I was also having some very bad pain under my left incision, but she only focused on the swelling.

    She immediately ordered me a Belisse bra with a Jovi-Pak Lumpectomy insert. Those suckers are VERY expensive, but ironically, Kaiser provides you two of each - one set to wear, one set to wash.

    Unfortunately, they did absolutely nothing for the swelling, as neither the pad nor the bra came even close to where the excess fluid was. I was compressed all over, except for the place I needed it the most. And it was REALLY hard to sleep in. The Kaiser therapist had no other ideas.

    I finally found an awesome Myofascial Massage Therapist and LE Therapist outside the Kaiser system. I've seen her four times now and each time I have felt SO much better. She does MLD, Myofascial Release, and Scar Tissue Mobilization. She also gave me home exercises, both for MLD and muscle stretching.

    However, that fluid issue is still a booger. Today, the therapist called in her seamstress, who is making me a custom pad (foam with LE channels) to wear under a high necked sports bra or cami I have yet to find.

    She also taped me up with Rock tape, since I couldn't find any Kinesio Tape before our appointment.

    I've had to increase the amount of MLD I do every day, even though I don't "officially" have LE.

    I did visit a mastectomy-supply lingerie shop, and the owner showed me some compression camis that looked very similar to the one in your picture.

    What's amazing to me is that if you need to meet with your fitter by appointment only, that you can't get an after-work appointment. Do they want to sell products or not?

    I'm SO sorry you are going though this - especially while you have to work!

    I'm sure you've seen a dermatologist for your eczema; have you thought about perhaps wearing a big soft Maxi-pad under your IMF to reduce the friction and chafing from a bra? (Put the soft part next to your skin, and maybe the adhesive part against your bra band?)

    Gosh...I hope you find some answers.....and some relief, soon!!!

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  • Cottontail
    Cottontail Member Posts: 374
    edited February 2013

    The fitter is only available 9-4; I work 8-4:30. Maybe the bulk of their clientele doesn't work, or is on medical leave? Idk.

    I worked full-time through all of treatment (took two days off for each chemo, two for surgery, and did radiation during my lunch break), but all that time adds up, so my vacation time is nearly gone and my FMLA is up in March. That will leave me with four months when I won't be able to take time off for any reason before I get more vacation time.



    I ordered a roll of kinesio tape from Amazon. My PT had a lot of success taping from near my nipple up to my collarbone to assist drainage. I only have one session left, and want to continue taping after I'm done. (I wouldn't try it if she hadn't shown me how to do it.)

    Of course, now I've got eczema on the top of my breast, as well, so no tape there today.



    I really like my PT, but I wish she'd suggested the compression bra and fitter situation earlier so I could have made an appointment for one of the days I already had off for PT.



    When I was a kid my mom took me to dermatologist after dermatologist, and they had little to no advice about my eczema. In college, the student health center gave me betamethasone cream, which gave me some unpleasant side effects so I quit using it. Two years ago I realized some breakouts happen after eating dairy, and I confirmed with my allergist last year that I'm allergic to dairy proteins. That doesn't explain all of them, as I gave up all dairy this past New Year's, and my hands are a dry cracked mess right now. I usually get the red dry patches randomly around my body in the winter, and they just go away around May or so. (This year I'm most affected on my left breast and all down my left arm, go figure.) I usually just use a bit of OTC hydrocortisone if I feel itchy, and just wait for Spring.

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  • Cottontail
    Cottontail Member Posts: 374
    edited February 2013

    Carol, thank you, I did read the page at that link before going to the store yesterday.  I saw they had one of the camis listed there favorably, but it was also one of the ones that I could barely get on.  At $40 each, it was out of my price range.

    My upper arm feels puffy and bruised today, I think I injured it trying to get some of those camis on.  :/

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  • purple32
    purple32 Member Posts: 3,188
    edited February 2013

    Maybe the bulk of their clientele doesn't work, or is on medical leave?


    I doubt it.  Many of us have to work just to keep our INS!  I was upset because our cancer support group ( which has moved) had almost all programs from 10-2 .  WTH?

    As for the camis, I go 2 sizes bigger than a regular jersey!

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  • Cottontail
    Cottontail Member Posts: 374
    edited February 2013

    Purple, that's the only thing I can think of as to why the fitter has they hours they do.

    I had tons of people tell me I needed to take more time off during treatment, and almost weekly I was asked why I didn't go on short-term disability. (I hadn't signed up for it during enrollment two months prior to dx, so it wasn't an option.) According to their business card, they started operation the year I was born, so they must be content with what they're doing.



    When I get ahold of them, maybe they'll be able to work with me on appointment times. I called yesterday, and twice today, and just got voicemail. :/





    Thank you for the sizing suggestion. I was so confused and frustrated trying to put on something so small. I thought surely something was wrong with me.



    I have been wearing the light compression cami, and I think it's at least helping my skin to heal, with not having a bra band rubbing under my breast. It's enough support for work. I got a little extra compression by layering it over an Old Navy tank (those are lightweight but are cut pretty high under the arm). I know it's not a medical solution, but it's the best I can do right now and better than no compression at all, I guess?



    The first day I had an anxiety attack wearing it, but was better today. I can definitely feel the difference when I get undressed at night.

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  • Cottontail
    Cottontail Member Posts: 374
    edited February 2013

    Finally got though to the fitter. They don't even carry the Bellisse. My PT said she sends people to that fitter all the time; the fitter didn't know her name or the name of the therapy location.



    Fitter said they carry the Amoena, or that some people use Jodee mx bras (which they also carry) as compression garments. She said I could try somewhere else for the Bellisse, but didn't recommend it, as compression bras aren't covered by any local insurance plan.



    I don't even know what to do now. My mental state is not such that I'm able to make this kind of decision right now.

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  • carol57
    carol57 Member Posts: 3,567
    edited February 2013

    cottontail, I wish I had a solution to suggest, but I'm left speechless. That is a horrible, horrible outcome. People can at least be honest with us, instead of sending us out on wild goose chases.  I'm including some LE hugs in this post.  Wish I could do more.

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  • Binney4
    Binney4 Member Posts: 8,609
    edited February 2013

    Cottontail, that doesn't sound right. Does your insurance cover arm garments? The coding for truncal would involve a separate diagnosis, but then the insurance would cover it to the same extent as arm and hand garments. That's like saying if you have bilateral arm LE the local insurance companies will only cover garments for one arm. You should not have to do their homework for them (for sure!) but you may have to. There's certainly a disconnect somewhere, and you're caught in the middle. Don't let 'em get away with it! Call some other area therapists (or even out-of-the-area ones) and ask how they get truncal garments covered. Both Bellisse and WearEase qualify as truncal compression garments, the same as if you ordered a custom truncal vest from Jobst or Juzo (don't do that, though--ugh!Tongue Out). Contact WearEase. Contact Bellisse. Tell them what's going on and ask them how to go about getting what you need through your insurance.

    That's just NUTS!!!Yell

    Big hugs!
    Binney

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  • Blessings2011
    Blessings2011 Member Posts: 4,276
    edited February 2013

    Cottontail - I saw my LE/MFR therapist yesterday after wearing the Rock Tape for 72 hours. Oh.....what a difference! I knew when I was laying flat in bed, and could actually see the skin above my boob wrinkle that we were on to something.

    Also, at my previous appointment, my therapist called in her seamstress, and we stood there and brainstormed about why the stupid Jovi-Pak compression insert didn't even come close to covering my swelling.

    So the sweet little elderly seamstress (also a BC survivor, and an LE patient) made a pattern, and took my Jovi-Pak home with her and returned it two days later completely custom-made! She rebuilt the Jovi-Pak, and created a new section using soft cotton, appropriate channels stuffed with foam, and the exact shape that I needed. The best part? She charged me $20!

    As far as the taping went, the therapist was thrilled because it worked so well. This time we used the real Kinesio Tape, and she changed the configuration a bit to cover more areas of swelling.

    The challenge was to find a bra to provide not only a place to hold the new padding, but also to provide enough compression up to my collarbone. Most bras don't do that. And I didn't need any compression in my arms or right side.

    I found a Spanx knock-off cami at Target (on clearance) that I got in an extra small size (I'm a medium.)

    Last night I used a very soft, step-in sleep bra - one I used right after BMX that didn't roll up or chafe in my IMF - to hold in the custom pad. 

    (I have used those big soft Kotex pads under my IMF when I was extremely broken out there at one point. They kept everything from rubbing on my very sore areas.)

    Then I put on the "compression" cami - BACKWARDS! It came up high enough in the front to compress all the padding evenly, left my arms and shoulders free, and caused no chafing under my arms.

    It was very easy to sleep in, and I got in my 12 hours of compression.

    I am SO sorry about all the hurdles you are facing. Sometimes I just sit and stare at the phone when I have to make those challenging, confrontational phone calls...and there have been times when I was dealing with some idiot on the phone and have just burst into tears from frustration and exhaustion.

    Big honkin' hugs to you......may you find assistance and relief soon!!!

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  • hugz4u
    hugz4u Member Posts: 2,781
    edited February 2013

    I am so jealous that you have access to your very own custom alterator.  I would give up my eye teeth... seriously to have a garment fitter like that. She even sewed in the appropiate channels. Wow, I bet she could make a wedding dress. It would be worth it to fly her out here and do a mass fitting for us West coasters.

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  • purple32
    purple32 Member Posts: 3,188
    edited February 2013

    Does your insurance cover arm garments? The coding for truncal would involve a separate diagnosis, but then the insurance would cover it to the same extent as arm and hand garments.

    THX Binney.  I didnt know that at all!

    My INS  CO is going to love me  ! Wink

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  • Cottontail
    Cottontail Member Posts: 374
    edited February 2013

    I found another local fitter for the Bellisse.  Called them today (again, they're only by-appointment, and only whe I'm at work).  The receptionist seemed to know as little (or less) than the first fitter I spoke to.  Their website said they did insurance billing, but every insurance question I asked them was answered with "every plan is different."  She couldn't even give me suggestions or examples.

    Hung up frustrated, without making an appointment.

    I emailed the "contact us" link on my insurance plan's website, and they replied that compression garments are covered, I'll be responsible for 20% up to my OOP-maximum, then they're covered in full after my OOP maximum.  (The first fitter told me most insurance providers only paid $20.90 per garment, regardless of the cost of the item, then said my provider didn't cover them at all.  I guess she was either lying to me, or they're doing it wrong.)

    However, my provider didn't answer my questions of what I need to do...  I think I've read that I need a prescription?  Can my PT write that, or does it have to be a medical doctor?    Do I also have to have a referral to go there, referencing the diagnosis?  Again, from the PT or a medical doctor?  If it has to be a medical doctor, I might be able to get my BS' nurse pratitioner to write me a script without seeing me.  They're open late enough I could just pick it up.  

    Also, the email included a "helpful list of insurance codes for billing," and every one of them is for pumps.  My question was specifically about garments.

    Yell

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