Prescriptions for lymphedema products

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GG2
GG2 Member Posts: 30
edited November 2015 in Lymphedema

I have a checkup scheduled with my MO and want to ask her for prescriptions for a night sleeve and a pump. Can anyone suggest a specific product or product brand to ask for?

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  • vlnrph
    vlnrph Member Posts: 1,632
    edited September 2015

    Does your lymphedema therapist have any opinions or samples to show you?

    Personally, I'm partial to the Solaris products that were invented here in Wisconsin (I have a Tribute night sleeve) and the FlexiTouch pump from Tactile Systems over in the Twin Cities. Both companies provide excellent service in addition to help with getting insurance coverage for these items which are quite expensive...

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  • Kicks
    Kicks Member Posts: 4,131
    edited September 2015

    Have you seen a LET yet?

    My night sleeve is a Solaris Tribute. Actually it is 5+ yrs old and now threadbare so have a new one that should be here any day.

    My MLD (Manual Lymphatic Drainage) machine is a FlexiTouch that I've had for almost 5 yrs. The only 'problems' I've had has been that some of the garment portions have had to be replaced because of 'blow outs' between chambers. It does a much better job of MLD than I can. I am the first one my LET guy ever ordered a FlexiTouch for.

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  • GG2
    GG2 Member Posts: 30
    edited September 2015

    Thank you, vinprh and Kicks. How interesting that each of you mentioned the same products. I saw my MO and she put in another referral to the lymphedema therapist ( I saw the therapist last year when this first showed up. ) The MO said the therapist and/or the nurse navigator will know what forms need to be filled out etc.

    If it's the same therapist (which is most likely) she's all for bandaging, but not for pumps. Maybe she'll like the idea of a night sleeve.

    Kicks, is that what you meant by "LET"

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  • Spookiesmom
    Spookiesmom Member Posts: 9,568
    edited September 2015

    Kicks probably meant lymphedema therapist. LET.

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  • Kicks
    Kicks Member Posts: 4,131
    edited September 2015

    YUP - LET - LymphEdema Tberapist. Not just a PT who claims to 'know all about LE' but without documentable education. My LET guy has his Master in OT plus his LE education.

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  • vlnrph
    vlnrph Member Posts: 1,632
    edited September 2015

    GG, the old "extremity only" pumps got bad reputations because they did not do an adequate job of clearing, then moving accumulated lymph fluid. Apparently, the controls could be adjusted by the user on some versions and people thought they should increase pressure to improve results. That could damage fine vessels/delicate tissue and make things worse. The goal of duplicating decongestive massage was not achieved with those units.

    However, newer models like FlexiTouch are computerized and include extra chest & groin coverage as well as sequential patterns designed to optimize drainage. Ask your therapist if she has evaluated the published literature or seen a demonstration of this product.The manufacturer will send a representative with a machine to your home or clinic and do an in person trial, measuring your arm before and after treatment.

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  • GG2
    GG2 Member Posts: 30
    edited September 2015

    thanks ladies, I'll be sure to bring these comments when I get my referral for my LET (and yes, she is a certified lymphedema therapist), even though I expect to come home swaddled in short stretch!

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  • GG2
    GG2 Member Posts: 30
    edited November 2015

    Hello lymphedema ladies,

    i received my solatris tibute night sleeve and wear it faithfully but haven't noticed much difference. My insurance denied coverage for a flexitouch and offered other possibilities. One is SC-3008-DL.

    image

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  • Kathy044
    Kathy044 Member Posts: 433
    edited November 2015
    Hi GG I was wondering whether you had heard about a night compression garment research study just starting with centres in Vancouver, Calgary and Edmonton? I read about it on the BCLA webpage. I am over six years out and still sitting at stage 0 LE with only a few minor hiccups so cannot offer any specific advice but I hear you about the dismal insurance situation in this province.

    Edited to add link to details about study, not very useful in your case needing something now but great opportunity for someone willing to chance being selected to the standard of care arm for 12 weeks with a custom measured nighttime compression garment provided at the end.
    Hey even being provided with 12 weeks of standard care at no cost might be considered something.

    https://clinicaltrials.gov/ct2/show/study/NCT02187289?show_desc=Y#

    Kathy
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  • GG2
    GG2 Member Posts: 30
    edited November 2015

    Thanks, Kathy! I did check the link you gave and it seems to me that the study will cover night time compression which I think I already have with the Solaris Tribute sleeve. It also appeared that the trial locations were limited to Canada (I live in US - Philadelphia, PA.) It sure is great to see trials like this as I have come to believe night compression and pumps should be the standard, not the exception in LE treatment.

    Good for you being 6 years out and with no more than "hiccups". Remain cautious with your right arm, however. "We know not the day nor the hour . . .

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  • Sammy1015
    Sammy1015 Member Posts: 6
    edited November 2015

    I have the Solaris sleeve and trunk garments.  I have worn them every night for the past 5 1/2 years.  Is the "pump" relatively new ?  this is the first I have heard of it.   I just wear a compression "regular" sleeve during the day. 

    I would appreciate any advice you can offer regarding the "pump"  Does it give relief so you can go without any wrapping or garment during the day ?

    I am always self conscious wearing the day sleeve, usually wear long sleeves regardless of the weather

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  • GG2
    GG2 Member Posts: 30
    edited November 2015

    I think vlnrph and Kicks will be able to give you more accurate information, Sammy 1015, but what I was told is that the pump replaces the need for MLD. I'm sure hoping that also replaces the need for bandaging and compression sleeves.


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