HELP! No sleeves small enough.

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Catmom888
Catmom888 Member Posts: 5
edited April 2017 in Lymphedema

I have a 5 1/2" wrist and Mediven no longer makes the sleeve that fit me and no other sleeve maker has one small enough either.

Any ideas? Custom is not in the budget. Only one lymph woman in town and can't get in to see her.

Comments

  • Binney4
    Binney4 Member Posts: 8,609
    edited March 2015

    Catmom, welcome!

    Have you tried Juzo, size I sleeve? The size range for the wrist is 5-1/2" to 6".

    http://www.juzousa.com/dealer/PDF%20Files/measbr.p...

    When Mediven changed their sleeve it messed up a lot of us, didn't it?! Maybe we should all let them know we're unhappy with the loss.

    Be well!
    Binney

  • Catmom888
    Catmom888 Member Posts: 5
    edited March 2015

    Binny,

    They sent me the Juzo and, with a 51/2 inch wrist, it gives me no compression. Wrist needs to be smaller. I called Mediven

    to see if they had any back stock and let them know the issue but the very nice lady just said she was sorry. Asked if I could talk to anyone about this she said they were all "out to lunch." I'll say!

    Maybe if enough people call they might make a smaller but, for now, I'm in a real fix. FYI the Mediven # is 1-800-633-6334.

    Thanks for the welcome and reply.

  • coraleliz
    coraleliz Member Posts: 1,523
    edited March 2015

    Catmom-I'll be in the same boat as you if I need to reorder. I think my wrist was 5 1/4. Not sure though. When I was getting fitted, there was another person on BCO, with a 5 1/2 wrist who found that some JUZO sleeves fit her. Her fitter ordered another one & it was smaller giving her a decent fit. I guess there is some variation/inconsistency with that brand. The JUZO sleeve I tried on at the fitter was too big & like you it gave me no compression. Would like to hear how you solve this problem. I'm next...........

  • toomuch
    toomuch Member Posts: 901
    edited March 2015

    catmom888 - Have you ever tried a Solidea Arm Care Sleeve? Solidea is known for the wave sleeve which is light compression but they also make a more normal sleeve in 2 compression levels. Unlike most sleeves it has a band that goes across your back and to your unaffected arm. I often find this sleeve more comfortable then my custom sleeves. The Small fits wrist size 13 cm -16 cm which is 5.1 - 6.3 inches. Here is a link to their website:

    http://www.solideamedical.com/index.php/shop-2/best-sellers/upper-body/solidea-arm-care-sleeve.html

  • Catmom888
    Catmom888 Member Posts: 5
    edited March 2015

    coraleliz, I think there must be a lot of us. I am going to call Mediven and try to speak to someone. I will keep wearing my old, pilly and ratty looking sleeves. You might call them--the more they hear from us, the better.


  • Catmom888
    Catmom888 Member Posts: 5
    edited March 2015

    Too Much, Thanks for this tip. I might have to resort to it even though it is pricey. May I ask, how much did your custom sleeves cost?

  • toomuch
    toomuch Member Posts: 901
    edited March 2015

    Catmom888- The custom glove and sleeve together cost about $800.00 which seems outrageous. Fortunately or unfortunately, I've met my insurance deductible the past few years. I get my gloves and sleeves in December and my insurance pays for them.

  • Catmom888
    Catmom888 Member Posts: 5
    edited March 2015

    toomuch,

    Good for you. I like to see those insurance companies pay out. Thanks for the info.

  • rrs
    rrs Member Posts: 614
    edited March 2015

    Catmom -  I have same size wrist.  Although, I had one of the Mediven sleeves that was too tight.  I just saw a LE therapist today and gave her the sleeve.  I had it for several years and it may be the type you need - Wish I had known.  The Juzo sleeves are different now and then smallest size is too large.  They also changed the fabric. 

     

     

     


     

  • rrs
    rrs Member Posts: 614
    edited March 2015

    I had a custom sleeve made once and it was terribly uncomfortable - way too tight.


     

  • coraleliz
    coraleliz Member Posts: 1,523
    edited June 2015

    bump-wondering what solutions my small wristed sistas have found.

  • SusanSnowFlake
    SusanSnowFlake Member Posts: 165
    edited June 2015


    I have to have custom, very long arms and tiny wrist. I only needed the sleeve, and it was no where near 800.00.  Mine is a Juzo costing 190.00. I like it, it doesn't have a seem and the fabric isn't as rigid as the normal customs.

  • rrs
    rrs Member Posts: 614
    edited March 2017

    Any developments on this? Like Catmom, I'm still wearing ratty, pilly, too loose sleeves..

  • rrs
    rrs Member Posts: 614
    edited March 2017

    Any luck with this?

  • Micmel
    Micmel Member Posts: 9,450
    edited April 2017

    Hi all. I'm reading that you're having issues with your lovely lymphedema. I only wear a sock sleeve now because I received a lymphedema automatic pump. It's amazing. There is an organization called Connie cares. They provide the machine if you have Insurance, or even if you don't, I called Monday and within a week I had my machine and it's like having your own therapist at your house helping relieve the swelling. I recommend it to anyone who would like some relief from the misery.

    Contact info 1-800-736-6320

    If this can help anyone. I'll be so pleased!

    Sending thoughts of strength

    ~M~

  • Kicks
    Kicks Member Posts: 4,131
    edited April 2017

    Micmel - I've had my FlexiTouch for 6 yrs and it is fantastic. A major part of my daily LE management. I was the first one that my LET guy ordered one for. Right now I'm waiting for new garments for it as the old ones have had 'blow-outs' between the chambers. Will be glad when the new ones get here.

    Amapola - when you say you get "extra compression from the custom fit glove" are you saying that it is a higher level compression or that it has the pocket on the back that can be used with 'swell spot pads' to increase compression when needed?

    As I have said many times, I have to have custom garments as they do not make any sleeves in the compression level that I have to have that come close to fitting me. Because of having syndactyl (webbed fingers), it takes very careful measurements to get gloves that do not cut very painful sores between my fingers. Thankfully, I have a fantastic LET Guy who is the one responsible for ordering my garments and my care. It was a bit of a 'struggle' early on til got it 'figured out'.

    My custom gloves have the pockets on them as I like the feel of them with the pocket much more than without it.To me, it just feels more 'stable' and comfortable. I never use the pocket for the pads they always send but give them back to my LET guy to use for those who need extra.

    Micmel and Amapola - do either of you use a night garment? They are another part of managing LE. They work differently than day garments. Night garments are designed to work passively (while you don't move/ sleep) as opposed to day garments (sleeves and gloves) which work actively while you are being active ('up' moving around).

  • Micmel
    Micmel Member Posts: 9,450
    edited April 2017

    kicks. I do not use a night garment, I just got my machine today and it is already helping. I am interested in hearing more about this night garment. Thank you so much for sharing.

    ~M~

  • Kicks
    Kicks Member Posts: 4,131
    edited April 2017

    You can find the Tribute (which I have) at www.solarismed.com/products . There are other manufacturers of similar night garments. They are referred,to here often as 'oven mitts' as they are rather bulky/'clumsy'. But do work while sleeping/still.

    I had been using my day garments, night garment and doing daIly MLD long before my LET Guy decided to order my FlexiTouch.

    Which MLD machine did you get? Different ones are somewbat different. My FlexiTouch is 6 yrs old. It takes an hour for it to run the entire cycle. They have a newer version of it now but my machine is still working good - just issues with my garment parts so will be getting new ones for my unit instead of for the new version and it be reprogramed. At least that's how I understand it.

  • Micmel
    Micmel Member Posts: 9,450
    edited April 2017

    kicks. I also have the machine that runs an hour in cycles as well. I find it relaxing. It really does feel good. Like my therapist is right next to me . It's called Circuflow 5150 series. It has like four arm chambers that expand per timing sequence like a cuff that they take blood pressure with. But it's really long. Of course entire arm sleeve. I am happy to have it. My arm garments that I sleep in are the ones that I wear in the daytime with. I also decompression wrap my arm two times a week if needed. It helps tremendously, I will say I have been lucky, they took out 35 nodes and I only have a very mild case, which is why this machine was very vital , to keep it in check. As if we all don't have enough to deal with. I will check out the night garments. If anything can help me, I'll take a look!! Have a great day filled with happiness! ~M~

  • Kicks
    Kicks Member Posts: 4,131
    edited April 2017

    Micmel - if I understand correctly what you wrote (and what I looked up at CircuFlow), there is only an arm sleeve with it. Different than FlexiTouch which does complete MLD area as opposed to just arm.

    FlexiTouch has 3 garment sections - upper leg, upper body/chest and arm that all work together for a complete MLD experience. (They also have garments for those who need leg MLD.)

    There are many 'chambers' in each section. The entire cycle is 1 hr (at least for me). The first 1/2 hr works individually startin in leg area and moses on to 6 different areas up, over and down (5 min approx for each section). The last 1/2 hr reverses and doesn't 'concentrate on the areas individually but continually moves from hand/fingers onto arm and up to shoulder, chest, abdomin, upper leg over and over. So it first drains node areas that are not effected by the LE so they are ready to accept the drainage from the compromised area/areas when it gets 'there'. If that doesn't make sense to you, I'll try to explain 'better'.

    There are dfferences in the different MLD machines,/manufacturers, especially when it comes to price.

    I have always been told to NOT wear day garments at night. The principles that day garments are designed for is 'moving'/being active which one isn't while sleeping overnight. Night garments are designed to work while 'passive' - little to no movement.

  • Micmel
    Micmel Member Posts: 9,450
    edited April 2017

    Connie cares 1-800-858-1460

    I got my pump free. Insurance doesn't matter with this foundation. They are amazing. I had my pump with in a week. Get one. They are great!

  • Kicks
    Kicks Member Posts: 4,131
    edited April 2017

    Amapola -

    Micmel gave the phone number for Connie Cares. You can also find info at www.conniecares.org . I'm an Army Vet and get my care through VA so they handle getting what I need.

    My custom day garments are Juzo Expert Cotton (18-21) and my night garment is a custom Solaris Tribute. I get 2 new sets of day garments every 6 months and my first night garment lasted over 5 yrs.

    I have to have low level compresssion (18 - 21) as higner level makes my LE quickly worse (within 1/2 an hour). I'm not a 'large' person - 5'6", 125 lbs but they do not make any low level garments that would fit my arm in the compression level I have to have. For some, it takes high level to control. But, that's not true for all of us - high can make worse just as low can make some worse.

    For my hand - besides the compression level I have to have, I also deal with syndactyly which is not quite as 'simple' as getting the correct compression level (though it be a problem). Syndactyly is webbing of fingers and/or toes (think frog or duck feet). For most, it is very minor and will never be noticed throughout life - BUT for some of us - it is obvious - for some not so obvious until something like needing gloves when LE presents. For me, I always knew I had ''frog feet' (webbed toes 1/2 way) and it was just laughed about. When I had to start with gloves for LE, it became very obvious immediately that my hands also are syndactyly but not as extreme as toes. 'Standard' gloves literally CUT the skin between my fingers making very painful open sores.

    I am so fortunate to have had my LET Guy - yes it was a challenge but he perservered.

    Syndactyly is considered,to be a 'birth defect' and effects to varying degree about 1 in every 3,000 births.

  • Micmel
    Micmel Member Posts: 9,450
    edited April 2017

    Kicks~ that pretty amazing. I wouldn't want you to be in anymore pain. Lymphodeama is quite painful and my nerves under my arm are shot. I am rarely comfortable and always massaging and trying to apply lidocaine 5% ointment which helps calm down the awful raw nerve pain. It really does help a lot. Pallative care doctors are so very helpful. Sounds like you have he super pump! I hope it brings you the help that you need. I hope anyone who needs a good pump ,that doesn't involve an entire trunk and legs involvement, the one I have gotten through Connie cares is just for my left arm and yes has four chambers. It's does a great job. Hope everyone finds relief. I keep you all close in prayer. ~M~

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