Frustrated

mary625
mary625 Member Posts: 1,056
edited August 2015 in Lymphedema

Coming up on my 3 year BMX anniversary, and I have only ONE sleeve. I won't go through the entire story of two PTs, two attempts at CDT, but then at the end, sleeves are ordered and either come in the wrong size or don't come for day and weeks on end. The most recent attempt has been going on since before Thanksgiving. I have to plan my washing at the end of every 3rd day so I can go write into bandaging or evening garment. It's to the point now that I think I'll try to do my own ordering and pay out of pocket. Sorry, make that 3 PTs including the one in NOLA.

· Share on FacebookShare on Twitter

Comments

  • runnergirl26
    runnergirl26 Member Posts: 82
    edited August 2015

    sounds like we are in the same situation. So frustrating. I dont think i will ever get my hand and arm back down to normal size despite doing everything that was asked of me. I have a sleeve that doesnt fit and four gloves that dont work either. when I ask about custom all they say is its too expensive. I have been trying to get a custom sleeve and glove all summer and still havent gotten anywhere.

    · Share on FacebookShare on Twitter
  • patriciakono
    patriciakono Member Posts: 10
    edited August 2015

    I am sorry you are having these problems too. I thought we had found the perfect compression garment, but the sleeve is too tight and short, and my gauntlet disappeared (maybe our dogs, maybe it is hidden in a drawer). I can't believe the sleeves have that silicone at the top (irritates my skin). Am searching, and looking for alternatives. Didn't know it would be so hard to control the lymphedema.


    · Share on FacebookShare on Twitter
  • Kicks
    Kicks Member Posts: 4,131
    edited August 2015

    It is imparative to get properly fitted garments in the correct compression level to manage LE. Wrong fit or compression level can cause harm. I have to have low compression as high causes greatly increased LE. Also there are no OTS (Off The Shelf/ready made) garments that come close to fitting me - I'm 'weird! . So I have no options other than Custom garments.

    Are you seeing a LET {LymphEdema Therapist) or some PT that claims to know 'everything about LE' but has had no education. Have you seen an OT (Occupational Therapist) who is also an LET? My LET guy is an OT and the PTs are not allowed to do anything with me without his approval.

    Just because garments are Custom does not mean that they are perfect immediately or with each reorder. My hands are somewhat 'webbed' so it took tweeking the measurements several orders before they didn't cut the webbing. Now he just reorders when it's time. There have been a couple of times that one of the gloves (I get 2 new sets every 6 mths) had to be sent back because they were not made to the specks at all.

    It is important to be sure the fit is correct as is the compression level.

    patriciakono - my sleeve are ordered with the silicon beads as they help keep it from slipping or rolling.


    · Share on FacebookShare on Twitter
  • SusanSnowFlake
    SusanSnowFlake Member Posts: 165
    edited August 2015

    This thread hits home. I have 2 sleeves in the drawer that don't fit, along with 4 cami's, and 2 bras. I finally got a custom and it does fit but lost the glove thingy 2 week after I got it. Last year my PT was covered but now it's not because I think there is someone new in the coding department of Community hospital I owe over 500.00 for 6 appointments. I need a new sleeve so I imagine that won't be covered either at 200.00. I'm broke after receive a Prolia shot from my Oncologist that cost 4,500.00, this was covered last year. Prolia only cost 800.00 to purchase but the fact that I got it at the Oncologists office means the prep (tearing open the prefilled shot) and sticking it in my arm is vary taxing and time consuming to the staff there. When talking to Community Hospital I was told in a rather abrupt tone " Cancer drugs are expensive" I explained that this is a bone density drug she said "it costs to employ good professionals" I had to pay 1,800.00 of that. I'll be getting a script for Boniva that will cost me 5.00 at the GP's with the lower grade professionals from now on.

    Frustrated? ME TOO.

    I refuse to support the big business of cancer, I'm going to use my GP and be my own cancer LE contractor. I'm going to deal with people from different health groups from now on, they don't need to communicate with each other they need to communicate with me.

    · Share on FacebookShare on Twitter
  • glennie19
    glennie19 Member Posts: 6,398
    edited August 2015


    It is so frustrating, Susan.   I feel your pain.  The only place that has certified LE therapists in my town is at the OTHER hospital, not the one I work at. So they want me to pay thru the nose to go there. I finally got permission to go there for my usual copay after they investigated and realized that there was NO ONE for me to see at my hospital.  But everytime the bill goes to my insurance, Blue Cross looks at it cross-eyed and says, no,,, and I have to appeal bascially every single claim.  We have to deal with this for the rest of our lives,,,, and IT SUCKS.

    · Share on FacebookShare on Twitter
  • mary625
    mary625 Member Posts: 1,056
    edited August 2015
    I had forgotten about this post, and there's an update. I ended up finding out that the insurance company was paying around $450 PER SLEEVE! (off the shelf, not custom) with my co-pay at about $50. Then I found guess what? I can buy the sleeve for just over that amount on lymphedema supplies .com website. I called and complained to both the sleeve and insurance companies. No one seemed to care.
    · Share on FacebookShare on Twitter
  • glennie19
    glennie19 Member Posts: 6,398
    edited August 2015


    Wow, Mary,, that seems kinda crazy! The Jobst off the shelf are $75 at my local shop.  Cheaper online.

    · Share on FacebookShare on Twitter
  • SusanSnowFlake
    SusanSnowFlake Member Posts: 165
    edited August 2015

    @Mary...My custom sleeve is only 200.00 (Juzo) medical billing is crazy. Something is very wrong with this, seriously. The insurance companies should have a problem with this.

    · Share on FacebookShare on Twitter
  • carol57
    carol57 Member Posts: 3,567
    edited August 2015

    Mary 625, I had a similar experience with another medical device, and it is outrageous. The whole DME industry needs some scrutiny. I had to wear a brace for a month after hip surgery. I was sent to a DME to get it, and it came in S, M, and L. The fitter 'fitted' it to me by cutting off a length of velcro that was too long for my needs. He also made an adjustment to a little dial. It cost $900; I paid 30% and insurance covered the rest. After wearing it a few days, the adjustment dial came loose, and I thought perhaps I could find a YouTube video explaining how to re-set it. That was easy enough to find--no 'fitter' needed, really. And...I found I could buy the absolute identical brace, new, on Amazon for....$300. Presumably whoever sells it on Amazon is making a profit, plus Amazon gets a share, so the cost from the manufacturer is probably around $220-$250. So, $650 added expense, because it traveled from the manufacturer to (perhaps) a distributor, and then to a DME's retail shop? There should be added cost for distribution, but this is abusive. I teach commercial credit analysis to bankers, and I've seen the financial reports of tons of businesses in the past nearly 40 years. There's no legitimate way that this kind of mark-up can be justified.

    Glennie, the insurance companies should have a problem with this, but they don't. The only control I could detect is that I learned that my insurance company required a real signature on the doctor/surgeon's prescription for DME items, no rubber stamp allowed. Apparently there 'were' abuses in the past, and fake prescriptions were being issued to give people items they didn't really need? Now, if the doc orders it, it gets approved.

    I do wonder what will happen to sleeve costs if the Lymphedema Treatment Act is ever passed. Will costs go down because huge Medicare will be negotiating costs for items it currently does not cover? Private insurance usually follows Medicare's lead.

    · Share on FacebookShare on Twitter

Categories