Custom Sleeve Dilema

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Jennifer1295
Jennifer1295 Member Posts: 244
edited June 2014 in Lymphedema

I was measured for a custom sleeve a couple weeks ago. After a hassle with the company fitting the sleeve, seems like they now require a letter of medical neccesity and a letter from the doctor stating their patient was diagnosed and does indeed have LE. (Mind you this is not the insurance company asking for this). So the company held my garmets hostage until they recieved this from the doctors office. Any way I get there and the day sleeve is too short and is too loose. It falls down as soon as I moved my arm nd there is way too much uper arm not covered by the sleeve. So I am remeasured and then remeasured by another fitter. The second fitter tells me my arm measures the same (although the measurements are now different) and there is not much that can be done. I told her the sleeve does not fit, period. She then says well I guess we could do some adjustments. Then we get to the night sleeve and well they totally ordered the wrong sleeve.This one is even looser and they ordered a sleeve w/o the hand/thumb portion. Once again there is a discussion about how loose the sleeve is and how short it is. So of course I leave with no sleeves and their assurance the new sleeves will come back right.

The most frustrating part was the first fitter had been fitting compression stockings and was learning to fit compression sleeves. But the second fitter seemed as if the first fitter should know what to do, but she didn't and we both wanted the second fitter to advice and help. I know things happen and I have had to send sleeves back. However If the sleeves do not come back right I don't think I even want to work with this company. The attitude was as if this was my fault. They even indicated that my arm could have changed. Never mind they just remeasurded it. I have not paid for my portion (15% copay) and the insurance claim has not been submitted. I am tempted to call the insurance company just to make sure they do not pay a claim until I have my sleeves. So has any one experienced this? Has anyone walked away from a company after having something like this happening. I was understanding but kinda of upset at the same time. I have gone to this fitter before but the staff has changed and I just don't know any more.

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  • Binney4
    Binney4 Member Posts: 8,609
    edited November 2011

    Jennifer, finding a fitter you can trust and depend on can be pretty daunting. I sure have walked away when the fitter didn't know what she was doing. Poorly fitting garments are useless, and we shouldn't be stuck fighting for a good fit with an incompetent fitter.

    But on the other hand, even with my excellent current fitter I've sometimes had a lot of trouble getting garments that work for me. Lots of things can go wrong, and remakes can take a ridiculously long time. It helps if your fitter has a good relationship with the manufacturers, but that comes with time and experience. 

    My fitter also requires a prescription, and I'd guess that's pretty much standard. Insurance won't pay for garments that aren't prescribed, and the fitters want to know they'll be paid before they take on the process of fitting and ordering.

    Still, it sounds to me like the people you're dealing with are not a good fit for you! I did have a fitter once who acted like it was my fault when garments didn't fit, and it made the process of getting new garments truly humiliating. I dreaded it. I suppose you could complain, but for me that just added to the humiliation, so I went in search of a better fitter and fortunately found one. She's not close by, so the twice-yearly garment replacement ordeal involves quite a trek, but I'm willing to do it for the competence and good relationship.

    These things sure aren't easy!Tongue out Keep us posted.

    Gentle hugs and a plate of brownies,
    Binney

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  • kira66715
    kira66715 Member Posts: 4,681
    edited November 2011

    Jennifer, a good fitter is hard to find and worth sticking with when you do find one. I've sent back a glove 5 times, to the point the Juzo rep came and lectured at me, and my fitter stood up for me with him.

    My Solaris had to be completely redone, and it was ordered from a woman who does all the fitting for Mass General! 

    So, even a great fitter can get lousy results, but a great fitter will force the companies to make the garment fit and work for you.

    I've tried to deal directly with the companies, and I found that horrible.

    My great fitter is on maternity leave, and I'm hoping she decides to come back to work--I could use new gloves....

    You do need a prescription and a letter of medical necessity, and often insurance reimburses so low that the DME companies actually lose money on the products. We had the major DME people leave our state, and when I contacted the head of the LE department, she said they couldn't afford to keep doing LE garments. They made up the loss on orthopedic supplies...

    Great, so no one wants to fit us, because it's not an economic benefit for them, and the companies are often very hard to deal with. My LE therapist has her own account at Juzo and tells me the garments will just come in completely wrong, and she sends in the same measurements.

    Kira

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  • Outfield
    Outfield Member Posts: 1,109
    edited November 2011

    Jennifer, my fitter was great but my two fitted sleeves (Juzo) are not even the same length.  They're both acceptable and seem the same diameter, but the longer one stays up better.  So even if you get a good fitter it's no garantee.  

    What my fitter did do (sounds like yours are shirking the responsibility of their job!) was to keep working with me until I had some garments that fit.  Those two Juzo sleeves were sleeves #3 and #4.  My glove, which I don't need very much at all, was try #3.   

    Are you in an area where you can try someone else?  

    Before you make any decisions about paying, I would consider talking to your insurance company.  My insurances (I've had two types in my city) are both local companies and I've found their customer service to be excellent.  Also, is the fitter part of an organization where there would be a higher-up you could place a complaint with? 

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  • Jennifer1295
    Jennifer1295 Member Posts: 244
    edited November 2011

    Well I decided to call the company and not to proceed with having them re-do my sleeves. The fitter mentioned to me she was just getting ready to work on my sleeves and I told her I changed my mind. She said well I don't think you can do this and checked with another person in the office. I told her yes I could because they did not deliver what I needed and the sleeves one way or another would be going back to the manufacturer. She said well we will have to talk to the owner and let you know and call you back. I told her well it makes no difference to me because I was not excepting the sleeves. I know they can not bill the insurance comany until I recieve the sleeves, but will also alert the insurance company just in case.

    My comfort level with both fitters just is not there. The second more experienced fitter just seems to want me to accept the sleeves the way they are. She gave me the impression I did not know what I was talking about with the fit of the sleeves. I felt I needed to do too much explaining and the fitter was not listening to me, like I was a number at the deli and she was ready for the next customer. Oh and something that really does not mean too much but I have always been given a choice in the colors of my sleeves, you know between three shades of beige and then black - lol. On my night sleeve I thought it was weird that she told me my traditional black Tribute night sleeve would now come in blue and not black. Now I do always get a new/current RX from my doctor each year so no issues there. But this company who I had delt with in the past just decided they wanted a letter of medical neccesity and a report or clinicals from the doctors office indicating he has diagnosed or witnessed that I do indeed have LE and need the sleeves. When they did not get this right away they started calling me to put pressure on the doctors office. When I called I actually listed to the voice mail of the nurse in charge of this and she was not in the office during this time so all they had to do was wait a few days. Of course she was back in the office when I called and she called me back right away.

    We have two places that fit LE garmets (and accept our insurance) and the place I just left has multiple locations. I did call the other place and explained the situation to them. They said I could make an appointment and start over with them. So I talked to the nurse at the doctors office and she sent me a RX for a second attempt at new sleeves.

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  • Binney4
    Binney4 Member Posts: 8,609
    edited November 2011

    Jennifer, brava!KissCoolLaughing Let us know how it goes with the new fitter.

    I was going to ask how you're doing (haven't heard from you in a while) but you sound so good and so strong. Yes!Wink

    Hugs,
    Binney

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