New to LE sleeves and compression and have questions.

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cinnamonsmiles
cinnamonsmiles Member Posts: 779
edited June 2014 in Lymphedema
I got my sleeves from the medical clinic. I didn't have to pay upfront, so I will put it on my $1489.89 Medicaid 6 month deductible. Since Medicare doesn't pay for them, I am not sure if the state will count that or not. Either way, I will be on the payment plan.

She gave me ones from a company called Juzo. I see on the box it says size VI. It doesn't mention class.It says Soft, Sleeve, Max, Regular. At another part it says 20-30 mmHg.

I am really disappointed in this therapist. She claims to have all this training, but yet mentioned NOTHING about what I could be doing at home. I had to find out online to drink more water and that there are things I could do at home and bring it up to her.

I know I don't have it bad as others, but my post mastectomy pain sure is. I had to research so much and learn so much on my own. I don't think I should have to ask and pressure my LE therapist to give me information. She should be handing it out readily with prompting on what to do. It seems like I am just a job to her(and that you all and me are doing part of her job for information dissemenation), and really doesn't give a rats ass. I just show up, she does the massaging, I leave. She wasn't even mentioning LE sleeves until I did!!!

I really have no other choice around here for therapists.

She is also supposed to be heading up the Stepping Stones Post Cancer program to help get us in shape. I get nothing about that even though I have the referral from my doctor. My physical therapist for my back has been full of information for info. on easy exercises to begin with.

OH, and I have a ridge of these little white mushy dots on the upper rim of my LE sleeves. Within minutes, I get dot imprints on my upper arms from it. And the upper arm gets a band indentations on it as well. Is this normal?

Thanks for the help.

P.S. I also have truncal LE. She suggested that I buy some compression tankini/camisole for it. But I can't even wear my swimsuit for very long because the edge hits where I have extreme pain. It seems like my Le therapist doesn't care. I have heard of ladies wrapping. Is this something that could be done on the chest area and sides of chest without cutting into the armpit? And what is used for it?

I guess I have to ask questions here, find out my information then go to my dumbass Le therapist.

I am sure glad you ladies are here. But not glad that you have LE and pain. 

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

    CinnamonSmiles: there is a concern if you get a sleeve without hand protection, that you could push fluid up into the hand. Here's a link to a great article about hand protection with sleeves, by Andrea Cheville, on the lymphadiva's site

    http://lymphedivas.com/lymphedema/gauntletandsleeve/

    It sounds like you got a Juzo sleeve, possibly the soft fabric rather than the varin, size VI

    Here's a link to the sleeve description and sizing from a great on-line company, brightlifedirect, they sell it for $57

    http://www.brightlifedirect.com/LYMPHEDEMA-PRODUCTS-Armsleeves/c133_134/p1105/Juzo-Soft-2001-Armsleeve-20-30mmHg---Silicone-Band/product_info.html

    The dots on the top are your silicone band. They will make some indents, but you don't want a tourniquet up there, here's a link to how garments should fit:

    http://www.stepup-speakout.org/proper_fitting_of_lymphedema_garments.htm

    You have seen our link to truncal LE, right? It suggests compression wear

    http://www.stepup-speakout.org/breast_chest_trunckal_lymphedema.htm

    A poorly fitting sleeve could push fluid up to the trunk--not to mention down to the hand. 

    Normally, people get two sleeves/gauntlets/gloves, so they wash one and wear one, and they wear out after 6 months of daily wear.

    Binney has truncal LE and has written about the pain, and I know she has tried a lot of different products to compress the area, along with swell spots. Wrapping is a bad idea, because you have to breathe.

    Why do you have to work so hard to get the help you deserve? 

    Let me know if there are more issues. We're here.

    Kira

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  • Moderators
    Moderators Member Posts: 25,912
    edited August 2012

    Hi Cinnamon,

    Have you seen the main Breastcancer.org site's new section on Lymphedema? There's great info on Lymphedema Treatments, including bandages, sleeves, and garments as well as exercise as treatment. Also, there's tips on Reducing Lymphedema and Flare Up Risk, as well as Finding a (NEW) Lympedema Therapist :)

    Hope this helps!

    --The Mods

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  • cinnamonsmiles
    cinnamonsmiles Member Posts: 779
    edited August 2012

    Thanks for the information Mods, but like I said, I am stuck with this LE therapist. The one I had in summer 2011, ignored my LE until the VERY LAST SESSION. She gave me 5-10 minutes instruction on LE manual massage. There are NO certified LE therapists within a 3 hour drive from me and I simply CAN NOT do the drive due to other medical conditions. So....it is her or nothing. I actually found this one by accident while I was getting PT for lower back pain, and was snooping around the therapist's informational cards on the wall and saw she was heading up a Cancer Stepping Stones program, and found out she does LE treatments. At least she is doing something with me and recognizes it. The one I saw for 5.5 months sure didn't.

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

    Moderators--thank you for all your help, I checked out the page on finding a new therapist, and it only lists LANA and the NLN: you have to pay to be listed in the NLN and LANA only represents a fraction of well trained therapists.

    We have a therapist locator page on our web site, referring women to all the reputable schools who list their therapists.

    For example: I am now a Klose trained CLT--did my 135 hours of training, but I'm not LANA eligible for another 6 months and I don't pay to be listed on the NLN site, and my amazing therapist, is LANA certified, but you can also find her on the Klose and Vodder sites, she got zero referrals from the NLN site, so she stopped paying their fee.

    http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm

    There are well trained therapists out there: it would be great if the bc.org page gave women the resources to find them.

    Thanks for all your help.

    Kira

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  • cinnamonsmiles
    cinnamonsmiles Member Posts: 779
    edited August 2012

    Ughh.. I hate having to double check and make sure my LE therapist knows what she is doing. I was wearing my compression sleeves today. The right is worse than the left. Well, seemed like my truncal LE got worse and kind of had a burning feeling. After I took off the sleeves, it seemed to calm down.

    Also, the sleeves seemed to give me a pinching and hurting feeling today.

    I see the LE therapist on Friday. But I trust you guys more than her... 

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

    Cinnamon, if the top of my sleeve is too tight it aggravates my truncal LE--I have no idea whyUndecided. You might need to replace that one--sorry!Tongue out You should not be charged for a replacement, so stick to your guns. (We need a smilie with a cowboy hat and a couple of blazing pistols.)

    Be well!
    Binney

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