How well do the sleeves work?

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Faith316
Faith316 Member Posts: 2,431
edited June 2014 in Lymphedema

My friend does not have BC, but is in end stage for Ewing's Sarcoma.  Her original cancer was in her leg, but it has now spread to lungs, lymph nodes in groin, ribs, spine, etc.  She has severe lymphedema in her entire leg to the point where she is now in a wheelchair and in severe pain because of the swelling.  She cannot even put herself into or out of bed, the car, etc.  She has been going to PT recently to a lympedema specialist who suggested a sleeve -- at the tune of $8000. 

At this point, any relief would be beneficial.  The pain is excruciating for her.  She is on morphine and is desperate for some relief from the pain.

Wondering if anyone can tell me how beneficial their compression sleeve has been to relieving the painful swelling.  I know this is a BC forum, but I'd love to be able to pass along some hope for pain relief to my friend.  $8000 is a huge amount of money and she is wondering if it is even worth it to try this.

Thanks in advance for any replies.

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  • camillegal
    camillegal Member Posts: 16,882
    edited April 2012

    OH u'rpoor friend and u care very much.Ithought my sleeve was expensive but it was for my arm and hand it was almost $600.00, Ins, paid some of it. The compression stockings being 20-30 (I think) I buy frrom Jobs, From what I was told this was the normal compression.  So I know they have to be made for each individual and measured but my LE is not like hers. Hers sounds awful. U'll have to wait for more women to write in, it just sounds like a ludicrous price to me and being so bad how much could it help? I know it helps me but not a tremendous amount, she's really having a horrid time with it, I'm sorry

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  • KS1
    KS1 Member Posts: 632
    edited April 2012

    Wow - that is expensive! I sure hope it is a custom garment (maybe a Tribute?). If the therapist gives her the measurements, she can shop around for the best price because they can vary a lot. 

    Last week I got quotes from 7 places with intenet presence for a custom Juzo soft sleeve (class 1 2001). I was shocked by how much the prices varied ($112 - $195).

    The best price was from BrightLife: http://www.brightlifedirect.com/

    I've bought non-custom garments from BrightLife, and have been pleased with the service (no questions asked 30 day return policy), but this is my first time getting a custom garment through BrightLife.

    You have to speak to Nancy Burkhart at Brightlife to order custom garments (877-545-8585).  Good luck to your friend - KS1

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  • Binney4
    Binney4 Member Posts: 8,609
    edited April 2012

    Faith, there are several types of lymphedema garments available and it's not clear which has been recommended for your friend. Let me list some of the options so you'll be able to better understand what's going on.

    First, there are daytime wear compression garments. Those are the ones most people are familiar with. They come in ready-made and custom, but your friend will most likely need custom. There's no way in the world they would cost $8000. Examples of daytime garment makers are Jobst, Juzo, Medi, and Gottfried.

    Second is night garments, of which there are two basic styles. One is double layered fabric that is filled with foam chips and "quilted" with stitching lines that help direct lymph flow in the proper direction. They're bulky but comfortable, and since she's not walking anyway they might be an excellent choice for her. My foam-filled night garments are for both arms, both hands, and my upper body (a vest), and they cost several thousand dollars, but it's still incomprehensible that a single leg garment, even of large proportions, could cost $8000. Examples of foam-filled garments are JoviPac and Solaris Tribute.

    The other style of night garment adjusts with Velcro straps all up the leg. Examples would be ReidSleeve, CircAid and FarrowWrap. These might be easier to get into, but in my experience aren't as flexible or comfortable as the foam-filled. They too are ridiculously expensive, but again I doubt they'd run as high as that.

    The last kind of garment is the sort that attaches to a compression pump, and the only company I know of that is likely to be that expensive is called Flexitouch. It's a good pump and many people use it for around an hour a day as part of their lymphedema self-care. When it's well-fitted by a good Flexitouch rep it's usually very comfortable and relaxing. It gives a gentle massage-type action to the affected limb and the trunk.

    That's a quick run-down. If you'd like to see what some of these look like either Google the companies or find them here:
    http://www.stepup-speakout.org/Lymphedema_garments.htm

    Depending on your friend's insurance she may be able to get part or all of the cost of any of the above covered.

    Please greet your friend for us, and do let us know if there's anything we can do to help.

    Gentle hugs,
    Binney

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  • Binney4
    Binney4 Member Posts: 8,609
    edited April 2012

    Oh, I should add that if it's a Flexitouch your friend is considering, she should contact the company's area rep and request a demonstration. They will do that either at her home or her therapist's office and she'll get to try it out. Best to do that before committing to anything that expensive.

    Be well,
    Binney

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  • carol57
    carol57 Member Posts: 3,567
    edited April 2012

    Binney, just curious, but is it possible to rent the Flexitouch pump and purchase only the garment portion that is customized to each user? Could that kind of arrangement lower the cost in a situation like this one, or for anyone who might benefit from a trial use to find out if it's effective, before making a purchase?

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  • Binney4
    Binney4 Member Posts: 8,609
    edited April 2012

    Carol, I've never heard of them renting the pump itself, though they have a generous policy of refunding for the pump (not the garments, though) if you find it unworkable. They do offer demonstrations, where they come and try the routine on you (not just show it to you), so you can see how it fits and feels. The garments are not custom made--they're standard sizes that are fitted with Velcro, usually by the pump trainer when you receive your pump, but they also teach you to adjust it as necessary.

    They also set up at the NLN conference and do shortened demos there for therapists and other professionals, so they know what it's like.
    Binney

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  • Faith316
    Faith316 Member Posts: 2,431
    edited May 2012

    Approved!  Approved! Approved!!!!  Just got the call this afternoon!! 

    It is the Flexitouch.  She did have someone come and do a demonstration on her.  She is so relieved as the insurance company previously was fighting her about the cost and then out of the blue, she received a phone call today saying it is approved and at 100% coverage!  It's a God thing!  I'm sure of that!  What a relief for her.  She is in SO much pain.

    Thanks to all of you who replied.  What a great bunch of thoughtful, caring women we have here on this forum.  I would also ask for prayers for her as in addition to this tremendous pain from the lyphedema, she is also running out of treatment options.

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  • Binney4
    Binney4 Member Posts: 8,609
    edited May 2012

    Faith, I just love good news!SmileCool Thanks for letting us know.

    If she doesn't have a foam-filled night-type garment, do suggest it to her. If her insurance paid for the Flexi they should also pay for a Solaris-Tribute or a Solaris-ReadyWrap leg/foot garment. They provide gentle support that can help relieve the pain, they're comfortable and even soothing, they can be chilled in the refrigerator when the weather is warm, (and if you request a full zipper in the Tribute they're easy to don). Several of the women here with lymphedema from advanced cancer have found these to be a real relief and wear them both day and night. (I wear mine in the day, too, when my lymphedeme is especially bad). If she orders one, don't hesitate to contact Solaris and advise them that she's in pain so they can hustle it up.

    Please tell your friend my family will keep her in our prayers, for moments of joy in every day, and the will to notice them.
    Hugs, prayers,
    Binney

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  • Kicks
    Kicks Member Posts: 4,131
    edited May 2012

    I've been away for the weekend so didn't see this. Am glad that your friend is getting a Flexi Touch - love mine. I have a Solaris Tribute for night and custom Juzo sleeves and gloves for day. If she doesn't have day and night garments, should look into them too.

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  • Faith316
    Faith316 Member Posts: 2,431
    edited May 2012

    I will pass these suggestions on to her and again, thank you so much for your tips.

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  • BeckySharp
    BeckySharp Member Posts: 935
    edited May 2012

    Faith--So good to hear the good news.  I hope she gets some relief soon.

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