Getting my First Sleeve...Advice?

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Dejaboo
Dejaboo Member Posts: 2,916
edited June 2014 in Lymphedema

I finally made my appointment to get a Sleeve & Gauntlet for next week.

going to a Medical Service that PT is happy with & sends her patients there.

I have read the Step Up & Speak Outs tips on fitting & printed it to bring with.

My LE therapist thinks I can get an off the shelve Sleeve.  She did not mention getting a gauntlet- but I plan to.

I will be using them for flying (hopefully that will be it : )  I have Truncal LE & Stage 0 Arm LE

What is the price range for these items?  I have a very high Deductible- so will be paying for them.

Any advice that you have for getting a sleeve/gauntet?

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  • jackboo09
    jackboo09 Member Posts: 920
    edited September 2012

    Hi Dejaboo

    I have just been told that I have to wait 4 weeks for a LE referral. Noticed some slight swelling in upper arm and it feels heavy and achy. Now Im worried sick because I have to wait for treatment when everything I have read about lymphedema suggests a speedy response. 

    Do you mind me asking: what is stage 0? I am hoping, hoping that I may not need a permanent sleeve on all day.

    My swelling is barely visible to others unless I point it out.

    Have been elevating my arm when I can but other than that not sure if I can self treat.

    Sorry cant help with your question. I live in UK so no cost involved with NHS, just a long wait.

    Best wishes

    Liz

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  • Dejaboo
    Dejaboo Member Posts: 2,916
    edited September 2012

    Hi Liz,  Im sorry you have to wait so long for your appointment.

    Im still learning about LE.

    You should start a new thread & ask for suggestions on what to do while you wait.  The experts here can explain the different stages of LE too.

    I know Deep Diaphramic breathing is important.  Elevating your arm & drinking alot of water...Those can all be done while you are waiting.

    Good Luck

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  • carol57
    carol57 Member Posts: 3,567
    edited September 2012

    Dejaboo, you might investigate BrightLife Direct's Allegro sleeve/gauntlet combo, which is about the lowest-cost garment I have found. Your DME might not handle it, but you might find that the cost is less than what you pay with your high deductible for a DME-supplied sleeve. In 20-30mmHg, the armsleeve/gauntlet combo is $27.84.  They have a very generous return policy, too, so if it doesn't fit right, you'll have no trouble sending it back for a full refund.  Here's a link:  http://www.brightlifedirect.com/LYMPHEDEMA-PRODUCTS-Armsleeves/c133_134/p2810/Allegro-20-30mmHg-Armsleeve/Gauntlet-Combo---%2364/product_info.html

    I have this and what seems like a fiesta of other sleeves/gauntlets, and I find that it feels and fits just as good as my much more expensive other sleeves. We're all different, so that's not likely to be true for everyone. It's not as attractive as a lymphedivas, but for most of my sleeve wear, I truly do not care.  It's good old, boring beige.  Ask the DME to give you a copy of your measurements so you can replicate if you decide to order online. First, check out the sizing/measuring chart online so you'll know if the measurement points he/she is taking are in the same spots as the Allegro measuring points.  Brightlife carries all the brands, so you can get a sense of comparative prices on their site.

    If you're stage 0, I hope your therapist also talked about wearing compression when you do stressful (to the arm and trunk) activities, such as cardio work, weight lifting, etc, and even hefting boxes etc. around the house.

     Jackboo, Stage 0 LE is sub-clinical (sometimes called pre-clinical) and it means you have LE without visible swelling. It's characterized by lots of sensations, including aches, heavy feeling, tingling, and these tend to ebb and flow according to stress on the arm/trunk and our LE care--whether we're doing our MLD, wearing compression, etc. 

    Carol

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  • Binney4
    Binney4 Member Posts: 8,609
    edited September 2012

    Dejaboo, may it go very well indeed!

    Okay, if you can do off-the-shelf and your deductable is high, best suggestion I can make is to get the measuring done and then go price everything online. Try bandagesplus, brightlifedirect, lymphedemaproducts for starters. The mark-up at a fitting place is sizable, and you may find buying it outright online to be a considerable savings. The advantage of getting your first set through the fitter, though, is that if she's good she can assure that the fit is right. From there on, you can order online. Just a thought.

    Let us know how it goes,
    Binney

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  • KS1
    KS1 Member Posts: 632
    edited September 2012

    Binney -- your comment relates to a question I have had for a while.  Are fitters required to give patients their measurements when asked?  KS1

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  • Binney4
    Binney4 Member Posts: 8,609
    edited September 2012

    I don't know. I've run into kind ones who find their own company's mark-up obscene. It's worth asking, and at any rate if you're able to use off-the-shelf there's no reason to order more than one set from a DME fitter.

    <sigh!>
    Binney

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  • Dejaboo
    Dejaboo Member Posts: 2,916
    edited September 2012

    Thanks Carol & Binney

      My PT did not feel I have arm LE- not even stage 0.  She feels I am just at risk.  I dont agree with that- with the pain I am having.  So no, She did not recommend that I wear it while doing those things.

     Thanks for that link...I just measured myself in their 4 measurment areas (im a seamstress- so I can measure good)  I am a size small.  My Underarm sits right at 12"  where a size small ends.  My other 3 measurments fall at the low end or middle of size small.  But they dont have lengths?

    Hmm..Id really like to get the sleeve for less.  I would feel very funny if I went to my appt & did not buy from this fitter....after she spent the time with me...should I order a sleeve on line & cancel my appointment?

    Will I be able to figure out how to put a Sleeve on by myself with out someone showing me?  Are their You tube videos?

    I have a new garden glove that might be helpful...thin with a rubber front.

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  • Dejaboo
    Dejaboo Member Posts: 2,916
    edited September 2012

    Thanks Carol & Binney

      My PT did not feel I have arm LE- not even stage 0.  She feels I am just at risk.  I dont agree with that- with the pain I am having.  So no, She did not recommend that I wear it while doing those things.

     Thanks for that link...I just measured myself in their 4 measurment areas (im a seamstress- so I can measure good)  I am a size small.  My Underarm sits right at 12"  where a size small ends.  My other 3 measurments fall at the low end or middle of size small.  But they dont have lengths?

    Hmm..Id really like to get the sleeve for less.  I would feel very funny if I went to my appt & did not buy from this fitter....after she spent the time with me...should I order a sleeve on line & cancel my appointment?

    Will I be able to figure out how to put a Sleeve on by myself with out someone showing me?  Are their You tube videos?

    I have a new garden glove that might be helpful...thin with a rubber front.

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  • Dejaboo
    Dejaboo Member Posts: 2,916
    edited September 2012

    is this a good video showing how to put on a Sleeve?

    http://www.youtube.com/watch?v=z0jA-w_aPNI

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  • pat01
    pat01 Member Posts: 1,005
    edited September 2012

    So glad I stumbled across this topic - I went to PT yesterday for lymphedema eval, and sounds like I am in a similar stage as you dejaboo.  I was fitted for a sleeve, and she told me to use it for air travel and vigorous exercise.  I have some slight swelling on my side and under my arm, but my arm just feels tight in the bicep area.  She said she will show me some self massage techniques next visit.

    My surgery was well over a year ago, and I've complained about this all along,  but just got a new BS who recommended the lymphedema eval.

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  • Dejaboo
    Dejaboo Member Posts: 2,916
    edited September 2012

    Im glad you found my thread Pat.  At 1st I interpreted your 1st sentence as Lymphedema Evil....Then I realized you meant evaluation...Im still think along the evil though- LOL

    Im glad your new BS recommended the Evil Eval- LOL

    Id love to hear how your massage learning goes next visit.

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

    Pat, I sent you a pm, as I live near you, and am familiar with the LE clinics and private LE therapists in the area.

    Kira

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  • carol57
    carol57 Member Posts: 3,567
    edited September 2012

    Pat and Deja, I think there's a new term to be coined here:  Lymphedema Evil-uation...

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  • Binney4
    Binney4 Member Posts: 8,609
    edited September 2012

    Dejaboo, that video is a bit over two years old, and at that time lotion ingredients like aloe and lanolin were damaging to some fabrics. At present there are different guidelines, and some sleeves can be worn with any kind of lotion. Others have a few specific prohibitions but still allow some kinds of lotion. It's never a good idea to avoid lotioning your arms, especially after a shower or a swim, as we need to keep them well moisturized to avoid infection risk. So check with your own garment's manufacturer for their latest guidelines.

    That said, do allow any lotion to "soak in" for 15 minutes or more before trying to don your garments. Makes the whole process much easier.

    The rest of that video is basically correct. If you extend your arm out in front of you and press your palm on the wall as you pull it up you'll find it all works better.

    One thing she fails to mention is the danger of smacking yourself in the face as you pull it on. Very ouchyYell. Turn your face away as you do it.

    If you get a garment from a fitter it's their job to instruct you in donning and removing the garment (and watch you do it so they can correct problems on the spot) and to give you laundering instructions.

    Crazy, huh?Undecided
    Binney

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  • Dejaboo
    Dejaboo Member Posts: 2,916
    edited September 2012

    went for my fitting today & got my sleeve.  I have a Juzo 2001MX  type CGR size 2.  regular length...I tried on the long...But that was just a bit too long.  I measure just at the size change for length. 20-30 mm

    My measurements that I took were exactly as hers were.  Except my mid lower arm...But that one was hard to recall where she measured.

     I did not get a gauntet- she did not have it in Cinnamon.  I may order that on line...I just am not sure which one I tried on...I do know it was a sz Med.

     But I really need a Gauntlet?  (no arm Swelling- just pain & so far just plan on wearing it for flying)

     I dont know the cost of the sleeve yet...I assumed it would be on my receipt...but that says 0...Will have to wait til it is run through insurance to see hope there is a good adjustment before I get th ebill

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  • Dejaboo
    Dejaboo Member Posts: 2,916
    edited September 2012

    Oh- I forgot.  I tried on several Bras & several Camis.  

    Nothing worked good. 

    Both offered less compression where I needed then what I have foudn at stores. 

    The Camis all increased my sternum pain...And were too high under the armpit. 

    The bras were not any better then what I have found either...

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

    I was told by the LE therapist I absolutely needed the gauntlet (and sleeve) for flying. If it keeps us safer, then why not?

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  • Dejaboo
    Dejaboo Member Posts: 2,916
    edited September 2012

    The cost for one

    If its not needed Id rather not spend more $$

    if its needed I will spend the $

    My LE Therapist did not recommend a gauntlet...Not that I agree with her...Just double checking again here with the experts.

    The gauntlet felt uncomfortable to me just in the time I had it on at the shop.

    I have deQuervains disease in my wrists...Dont know if it will cause more pain or not.

    But years ago when I had a very bad flare up with my DeQ.  I bought some compression gauntlets & they increased my pain considerably : (

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  • Dejaboo
    Dejaboo Member Posts: 2,916
    edited September 2012

    Funny.  So I signed in online to see if my Sleeve bill was submitted yet...Thinking everything else for the family had gone through...we havent had a bill/appt for 60 days or so...up pops $700!  OMG...I gotta go return that sleeve.  Turns out we hadnt been billed yet for my dds appendix annesthesia yet.  LOL

    So I assume I should be ordering this Gauntlet: (to go with my Sleeve post from Sept 19th)

    http://www.brightlifedirect.com/p1284/Juzo-Soft-2001-Gauntlet-with-Thumb-Stub-20-30mmHg/product_info.html

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  • liv-
    liv- Member Posts: 521
    edited September 2012

    ..hello everyone (((hugs)))

    does everyone that has a mastectomy wear a sleeve?>

    just remembered when i saw this thread my arm was measured prior to mastectomy??

    ....must have had chemo fog that day because i cant remember why.

     x

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