The blue monster

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Spookiesmom
Spookiesmom Member Posts: 9,568
edited June 2014 in Lymphedema

This thing looks like something a hockey goalie might wear. How on earth are you supposed to sleep with your arm in this contraption ?



I kept it on for one miserable night. The next 2 I woke up and ripped it off. I guess. I found it on the floor.



This isn't working.



Phooey on it!!!!!

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  • Binney4
    Binney4 Member Posts: 8,609
    edited May 2013

    Hockey goalie, yeah. Or attack dog trainer. Or it's an oversize oven mitt. My kids call it my Mother Bear outfit. It's impressive, yes?

    NOT!Yell

    Anyhow, tell us what's most uncomfortable about it for you, and possibly someone will have a suggestion. Bad fit? Too hot? Rubbing in some area? Claustrophobic? And last question, do you swell at night without it?

    Extra hugs!
    Binney

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  • Spookiesmom
    Spookiesmom Member Posts: 9,568
    edited May 2013

    It won't bend more than 1/8".



    I sleep with my hand under my ear, have for the past forever. This sucker doesn't bend. Period.



    Still haven't resolved the daytime issue with LE pt, so yes, it's swollen.



    At the moment, not wearing any of it.

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  • KittyDog
    KittyDog Member Posts: 1,079
    edited May 2013

    I have a tribute and found the more you wore it the more it gives.  Might be the washing..not sure.  I also have a jovi that I hate for the same reason.  It doesn't move and it is so heavy compared to the tribute.  

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  • NatsFan
    NatsFan Member Posts: 3,745
    edited May 2013

    Spookie - I sleep the same way and had the same issue when I first got my Tribute - stick with it and it gets better.  I think the sleeve starts to give a bit, and also your body gets used to it.   It really does work - my arm is all shriveled and small when I wake up after wearing it - a true miracle.  

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  • carol57
    carol57 Member Posts: 3,567
    edited May 2013

    My Tribute came with an outer sleeve that increases the compression and makes the garment much stiffer. I found weating the outer sleeve made the whole affair very uncomfortable, and it made my thumb go numb.  I use just the garment now, and the outer sleeve is in a drawer. It's easy to sleep in, especially now that I've had it for a few months and it's a bit softer from wear and laundering. I too sleep with my hand under my ear, and that's fine in the Tribute. Works great-I wake up with an ache-free arm.  Swelling is generally not my problem, but aching is and this helps a lot.

    Spookiesmom, I hope you'll keep trying to work with your night garment. It helps many of us.  I really look forward to putting mine on at night, because it feels so good to don it.

    Carol

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  • Spookiesmom
    Spookiesmom Member Posts: 9,568
    edited May 2013

    Are we talking about the same item? This monstrosity has about 8 Velcro straps on it.



    There isn't an outer sleeve on this contraption.



    Maybe if I put it out on the street and let traffic run over it?



    I can't sleep with my arm straight out all night. Even if I did, I'd be too witchey the next day.

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  • Marple
    Marple Member Posts: 19,143
    edited May 2013

    I wear a ReidSleeve at night and yes, it most certainly did take some getting used to.  In fact I had pain in my upper forearm similar to tennis elbow and I think it was because of the 'straightness' of my arm in the sleeve those first few nights.  I was several weeks before my sleeve and I developed something akin to an understanding. ;P  My arm hasn't improved with it but it also hasn't gotten worse.  I haven't wrapped for quite some time (months) and that has been as freeing an experience as the night sleeve is constricting.  I'm content and willing to make that trade.  Spookie, maybe you need to give it more time and wear it for shorter periods for some time to get your arm accustomed to it.

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  • carol57
    carol57 Member Posts: 3,567
    edited May 2013

    Spookie, it does sound like you have a Ried Sleeve, or similar, and I've no experience with that. It is more rigid, that's for sure. I like Marple's suggestion to wear for shorter periods for a while, but I'm in awe of your idea of how to deal with it...throwing it out under traffic sounds appealing if only for the (temporary) sense of satisfaction that would bring!

    Carol

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  • Spookiesmom
    Spookiesmom Member Posts: 9,568
    edited May 2013

    It is a Tribute.



    Awful thing.

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  • Marple
    Marple Member Posts: 19,143
    edited May 2013

    I didn't know the Tribute has velcro adjustments.  I got a ReidSleeve because ADP (assisted devises program) pays a %.  With the Tribute I'd be out of pocket for the whole amount.  But yes, if Tribute has adjustable tabs it's something I'd definitely look in to.  Having said that, Spookie, I can hear and understand your frustration but believe me, ReidSleeve really does look and feel like wearing a goalie pad on your arm.  Maybe you and I could start up a team. ;) 

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  • Marple
    Marple Member Posts: 19,143
    edited May 2013

    Spookie, do you or have you wrapped with short stretch bandages?

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  • Spookiesmom
    Spookiesmom Member Posts: 9,568
    edited May 2013

    I have the wraps, but my LEpt never showed me how to do it. When I picked u the garments I asked him about that again, he said no.



    This whole LE experience has been a fiasco from the start.

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  • Marple
    Marple Member Posts: 19,143
    edited May 2013

    Oh gosh, Spookie, so sorry about your therapist.  Many of us have been where you are for various reasons.  It's really challenging to say the least.  Do you have the option of going to a different therapist?  I'm afraid I don't know enough about you.  Do you have noticeable swelling or are you trying to keep things under control as they are?  Wrapping with SS bandages is a true art and to this day I cannot do it without help from DH. 

    My heart goes out to you.  Thankfully we have these boards and the gals who so diligently 'patrol' them.

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  • cookiegal
    cookiegal Member Posts: 3,296
    edited May 2013

    Honestly I failed night sleeve (and wrapping) too...mine was juxtafit. As soon as I get on my new insurance I am going to try a tribute, the super-oven-mitt.

    I know there are some reasons not to, but I usually wear an old day sleeve at night, with a medi glove.

    I sometimes wear the silverwave bi-lat at night. It's only 15-25, but it's very do-able, and my doc says that is preferable to wearing my day sleeve at night.

    To be honest, getting custom juzo sleeves was really what got a hold of my LE which has been relatively stable for a few years, on my arm.(Truncal is another issue.)

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  • Spookiesmom
    Spookiesmom Member Posts: 9,568
    edited May 2013

    Marple



    I said when I had the garments I'd be done with this guy. But I have quite a problem with the daytime things too. See my post, now what, it's red. My fingers turn a reddish purple. So he's trying to get auth from insurance to come in to remeasure.



    I did stop by another place for an off the cuff eval. This one was not pleased with anything I told him, including I should have a different fabric from Jobst.



    Sometimes I want to throw things and scream. So IF I ever get this mess squared up, I will be changing PTs. By then I'll be on Medicare with an advantage plan so I'll have to start all over in Nov.

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  • kira66715
    kira66715 Member Posts: 4,681
    edited May 2013

    Spookiesmom: Binney can speak to medicare and their coverage of garments--straight medicare covers nothing, but the extra insurance seems to.

    If it's a Solaris--which is the company that makes the Tribute, which is a quilted garment without velcro straps--they came out with a two piece garment with straps, the readywear.

    http://solarismed.com/products/readywrap

    The Reid Sleeve is a garment with heavy foam and straps and has a couple of products:

    It sounds like you have a Reid Sleeve Classic, and they don't bend easily and are very heavy

    http://www.lymphedema.com/rsleeve.htm

    As someone who has a closet full of failed night garments--they just don't do well for my hand, I have 2 Tributes (Solaris), 2 jovipaks, 1 Solaris Ready Wrap, and what works the best for me when I want a break is a Caresia, the relatively inexpensive garment made by Solaris that is made to be wrapped over.

    When I took my CLT class, they gave us one as a sample and I traded someone for a left arm/small and you wrap over it with 2 bandages, and it allows me to gauze wrap my hand, and works well and is comfy.

    http://solarismed.com/products/caresia

    I'm having major surgery next week and have to talk to my surgeon about what to do with my arm. My LE therapist would like me wrapped--me too--if that is vetoed, I'll gauze wrap my hand and wear a g-sleeve to visually get them off my arm, and I'll pack the Caresia. My LE therapist has said she'll come to the hospital and wrap my arm post op.

    Adds to the worry.

    Hey, I just sent back a Juzo custom glove, the second one from a new fitter, who was snotty and said "I'll redo it for you ONE more time." No, you'll redo it until it's right.

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  • purple32
    purple32 Member Posts: 3,188
    edited May 2013

    Sometimes I want to throw things and scream.

    Spookie

    For varyng reasons, we all now how you feel.  Thats why we have  GRRRRR!  thread  :>)
    These ladies will help you out . 
    Hang in there !

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  • Spookiesmom
    Spookiesmom Member Posts: 9,568
    edited May 2013

    Oops!!! My bad. It is a Reid. Opti flow. Yeah, flows right to the floor. Phooey on it. And other bad words I can't put here

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  • Binney4
    Binney4 Member Posts: 8,609
    edited May 2013

    Spookiesmom, if it's any comfort (fat chance!), the Reid Sleeve really is considered (by LE professionals) to be the gold standard for controlling LE at night (after wrapping, of course). And the Reid Sleeve people are the greatest--very good folk. Unfortunately, patients are not all universally happy with their Reid Sleeve experience, and I know of a great many of these sleeves that have been retired to the back of the closet.

    BUT! If you persevere as Marple suggests, a few hours at a time, giving yourself time to get your head around this, I think you'll find it gets quite do-able, and it really helps to manage the stupid LE. Kind of an extreme measure--but then, LE is an extreme, uh, sport.

    Hang in there!
    Binny

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  • Spookiesmom
    Spookiesmom Member Posts: 9,568
    edited May 2013

    Looks like this is headed to the closet!

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  • carol57
    carol57 Member Posts: 3,567
    edited May 2013

    Oh, rats, Spookiesmom, I'm sad to hear that, because if you can find a way to adjust to the darn thing, your arm will improve, and you may well get to a point of only needing to use it intermittently.  Can you try reaching customer service  at Peninsula Medical (Reid Sleeve maker) 1-800-29-EDEMA / (831)-430-9066 to ask if they have any standard suggestions or guidelines for getting adjusted to or breaking in the sleeve?  I'll bet you're not the only one who ever wanted to toss the thing into traffic to soften it up!

    I'm so sorry that you're having such a bunch of frustrations.

    Carol

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  • Marple
    Marple Member Posts: 19,143
    edited May 2013

    Mine is ReidSleeve Classic.  Spookie, it took me over a month to find the right compression and simply to get used to the darn thing.  I wonder even if you wore it for a few hours each night if you might find it becomes easier to manage.  What I generally do now is when I go to bed I take off my daytime compression and lie with my arm up........generally falling asleep.  Sometime between 9 and 11, depending, I wake up and put the RS on for the night.  I agree, it's an awful way to keep your arm so straight for hours but, it sure beats the horror I call wrapping.  I guess we all have our LE demons.  Hang in there Spookie.  If you're just starting with the nightsleeve I hope you don't give up too soon.  I sure do understand and empathize with your frustration. 

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  • cookiegal
    cookiegal Member Posts: 3,296
    edited May 2013

    Spookie, my take on this is... first things first.

    You **must** have a day sleeve and glove that works for you.

    At that point you will have a feeling for what works at night.

    The night sleeves are (to my understanding) a sub for wrapping.

    If you can master wrapping, you may be fine w/o a night sleeve per se.

    It all sucks, but honestly once you get the right day garments it will probably get better.

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  • Marple
    Marple Member Posts: 19,143
    edited May 2013

    Every time I see the 'Blue Monster' topic heading it kind of gives me a little chuckle.  (Sorry Spookie.)  We have a new furnace that when it goes in to the second stage it sounds like we're going to take off in to orbit (it's since been adjusted) so I call it 'The Star-ship Enterprise'.  My car has developed a new 'chuck' when it goes from reverse in to drive first time out for the day.  It's been named 'Chuck'.  And now my ReidSleeve (and I picked a blue colour) is called The Blue Monster thanks to you Spookie.  And what is it they say about things coming in threes?  I hope I've not offended. 

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  • carol57
    carol57 Member Posts: 3,567
    edited May 2013

    My Tribute is green, but I'm not going to call it the Green Monster, because that also means jealousy, and well...nobody on the planet is going to be jealous of my green oven-mitt-on-steroids!  

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  • Spookiesmom
    Spookiesmom Member Posts: 9,568
    edited May 2013

    NEWS FLASH!!!!!!!



    I fired the LEist this afternoon!!!! After I left a message at 7:30 am, and no return call, I called my insurance co. Who told me they have no record of him requesting more auth. I called him back with that tidbit, and told him I would be seeing someone else.



    So, I'll be calling that one tomorrow, the blue monster people, and Luna, to have my measurements sent to me.



    Maybe now I can get on the right track!!!



    Carol and Marple, y'all are sooo funny!



    Stick a fork in him, he's done.

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  • carol57
    carol57 Member Posts: 3,567
    edited May 2013

    Good for you, Spookiesmom!  Hugz has a place for that guy, wrapped in short-stretch, perched atop the Seattle Space Needle.  That's where she sends caregivers who do not play nice. Or even try to.

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  • cookiegal
    cookiegal Member Posts: 3,296
    edited May 2013

    good for you. Do you ever come to NYC, I have a good fitter.

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  • KittyDog
    KittyDog Member Posts: 1,079
    edited May 2013

    If it helps...I had those for my legs and after a week, I sent them back to Solaris.  I did not like them either and I can't imagine them on my arm.  

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  • Spookiesmom
    Spookiesmom Member Posts: 9,568
    edited May 2013

    Ah, Seattle is a bit far for me, think ill send him to the Everglades, much closer. Let the gators and pythons deal with him. Wrap him all over, of course.

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