Custom or Non-custom???

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garnet131
garnet131 Member Posts: 64
edited June 2014 in Lymphedema

The whole process of getting my first sleeves/gloves (Medi Customs, 1 black ("Blackie") & 1 beige "Ug") last fall was so horrid that I put off getting my replacements.  (Does anyone else name their garments?)  Can't put it off any longer and did get remeasured for custom about a month ago, but haven't given the go-ahead yet on the order due to questions.

Haven't been back to therapy--haven't really needed it and can't afford more since I'm still paying off the 2 rounds of 2011 therapy. But MLD and garments seem to be keeping my arm pretty much under control.  Last year my therapist put "custom or non-custom" on the prescription she wrote that my Dr signed.  The fitting place totally ignored non-custom and recommended custom so that's what I got.  However, after being educated by SUSO and you gals and dreaming of a colored Dreamsleeve, I put the new custom on hold and ordered a DS from Bright Life.  Today was the 4th or 5th day I've worn it and I'm eager to get several more in various colors.  As my daughter says, it's 5 or 6 of those for the price of one Medi, not to mention the fun colors, the comfort, and the joy of free fingers!!!

But I'm not sure if the DS is strong enough and sort of wonder if I should have one Medi to wear if/when I have flare days.

FYI, fitter (for new Medi) said my hand and fingers remain the same as last year, forearm is 1 cm more and upper arm is 2 cm more. But then she said that means I've stabilized and she would not change the sleeve order--would order the exact same measurements that were ordered last year.  Does that make sense?  If it's custom, shouldn't that added 1 and 2 cm be taken into consideration? 

Sorry this is so long--I'd appreciate any advice.

Comments

  • crystalphm
    crystalphm Member Posts: 1,138
    edited September 2012

    I hope you get answers on this issue. My Mom wears leg compression for LE and we are at the same point, wondering which is better. We spent a few days evaluating the situation, her ankle was better on over the counter, but the custom keeps the upper leg down. So I think the answer for her anyway is both and alternate. but finances are an issue.

    I just got a new sleeve/ gauntlet and I am shocked at how much firmness the old one lost in only 8 months.

    Well, this will get your question bumped up.

  • KS1
    KS1 Member Posts: 632
    edited September 2012

    Garnet131,   I agree -- If you are paying for custom, and you have new measurements, it doesn't make sense to use your old measurements.  I wear custom sleeves & gloves, and I find that the sleeves fit reasonably well even when my arm measurements change a bit, but even a < 1 cm change in a finger means that my glove  won't fit.   I have found that circular knit sleeves (e.g., Juzo soft) seem to be more forgiving with respect to measurement that flat knit sleeves.  Is your Medi sleeve circular or flat knit?  KS

  • kira66715
    kira66715 Member Posts: 4,681
    edited September 2012

    I also agree that the measurements should be accurate if you're paying for custom.

    Fitters!!

  • garnet131
    garnet131 Member Posts: 64
    edited September 2012

    Crystal - Yes, I'm sure that finances are an issue of most of us dealing with LE.

    KS - My custom sleeves are Medi Mondi and have a seam. Does that mean they're flat knit, as I assume circular would be without seam (but not sure I have that right).

    Kira - exactly!  Didn't make sense to me, especially at the price of custom that I'm paying b/c of high deductible!

    My 2 questions are:

    1)  Does the Dreamsleeve do as good a job as the custom Mondi?

    2)  Would it be better to have a custom as back-up to use on flare days and/or for exercise, flying, etc.

    I have $ set aside in my FSA and want to spend them wisely...and I want bright, happy Dreamsleeves in multiple colors!!!  (if that doesn't put my arm at risk)

    Oh--one more question:  I filled in a brief "history," but how to I get it to show at the bottom of my posts?

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

    I've only had custom sleeves and gloves (my Solaris night sleeve is also custom). OTS (Off The Shelf) do not fit me right so it's custom only. My hand especially is an issue as my 2 middle fingers are somewhat 'webbed' (all 'little' toes are webbed also and VERY short LOL) making standard gloves not an option. We are still, after 2 1/2+ yrs, making slight modifications to it with each new order. (Getting winter or work gloves has always been a 'trip' but they are a whole other world from compression gloves - for winter I usually wear mittens.) If there is a problem with custom not fitting, you can send them back for modifications - I've sent several back for modification. I've only dealt with Juzo for day garments so it may be different with other companies.



    I've been told that if you only have one set to wear - it needs to be replaced every 3 months as over that time of continual use, compression is lost with wear and laundry. I get 3 new sets every 6 mths. I don't throw away the old ones when new ones come but reserve/religate them to use when there is a bigger chance of them being 'ruined' - have an extra set at the barn, in my tackle box (so the new/good ones don't get 'fishy' smelling), an old set in a drawer at work in case I have to go out and do something 'greasy', same with each vehicle as a 'just in case'. I deal with LE BUT I refuse to allow IT to dictate my life - I will live life to the utmost.



    My care is through VA so I have no idea of cost - my LE guy orders them and when in, I pick them up.



  • Cindyl
    Cindyl Member Posts: 1,194
    edited September 2012

    Kicks- I'm surprised the the VA is willing to pay for so many garments.  (happy for you, but surprised)  They tell me my insurance (Dakotacare) will pay for two sleeve (-copayment) yearly.  Grumble.

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

    I have had excellent care through VA for many years. My BC care was out sourced so had civilian Drs. Some of my care is still out sourced and some is at Rapid/Ft. Meade. Because I don't have S/C disability (and Hubby's income) for many things I do have a very small co-pay. Hubby has some S/C so some of his care is totally covered but not all without a small co-pay.

  • crystalphm
    crystalphm Member Posts: 1,138
    edited September 2012

    This is awesome you get the VA to pay for these sleeves. It may wake up other medical providers to how important this is!

    There is hope.

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

    I have heard some horror stories about 'care' at some large VA facilities but we have a small one here and I have had great care for almost 20 yrs (Hubby retired so no longer had A/D Navy to use so started using my VA eligibility for myself.



    It is amazing to me that there are so many veterans who do not know all that is available to them through VA. In some cases, even spouses are included. In my case, while Hubby is retired Navy, I was Army myself. It is also surprising that many do not realize how many different programs there are.



  • KS1
    KS1 Member Posts: 632
    edited September 2012

    Kicks -  I had a Medi Mondi glove, and it was definitely flat knit.  

    Several therapists have told me that circular knit sleeves doesn't do as good a job compressing as flat knit sleeves, but my Juzo soft sleeve seems to do as good or better job as the custom flat knit sleeves I have had (Juzo helastic, Juzo helastic silver, Barton-Carey).  

    I really like my custom Juzo's circular (no seam) soft sleeves (i.e., same fabric as Juzo's dream sleeve just boring colors).  It moves with me, and doesn't bunch or irritate at the elbow.   My insurance limits the number of garments per limb they will cover, but doesn't specify whether they are sleeves or gloves.  So, I use my insurance to pay for the expensive garments (gloves and sleeve/glove combos), and pay out of pocket for Juzo soft sleeves.   As custom sleeves go, Juzo's soft sleeves aren't very expensive.  My therapist measures me, and I send the measurements directly to a company.  The (national) DME company I use (SunMed) charges me under $100 for a custom beige Juzo soft sleeve with silicon border when I pay out of pocket.  BrightLifeDirect.com charges me about $112.  KS

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