I saw my first person wearing a compression sleeve

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  • Ginger48
    Ginger48 Member Posts: 1,978
    edited August 2012

    Thanks for the responses. I was not given anything but a compression sleeve but I do not have any hand swelling. I think my LE is kind of mild. If I had not read the box I would not have thought to wash them daily. I just got a second sleeve in beige. My first set is black and it was too hot for the summer. How often do you get them replaced?

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

    Carol, excellent point! So many women have no avenue for LE information, and there's no telling how a few words of LE education might travel to someone who needs to hear it.

    One reason pumps are over-prescribed is because it used to be that was the only LE treatment most insurances covered. That was partly because LE therapists in the U.S. are a fairly recent development, and partly because it was cheaper to give patients a cheap pump and be done with it than to buy them several weeks of therapy, follow-ups, and compression garments.

    We've come a LOOOOOONG way, ladies!!KissCoolLaughing

    (So how come we've still got such a long way to go?!FrownTongue outUndecided)

    <sigh!>
    Binney

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

    Ginger, you should get new garments every 6 months--if worn daily. It's the rule of thumb, because that's how long the manufacturer guarantees they will have the compression, with daily use and washing.

    I do hang onto my old custom gloves, and will use them, but I do get new ones.

    When I went to the CLT training, I discovered that Juzo wants you to dry their garments on low to restore the "miracle fibers"--I always hung them to dry. Jobst elvarex needs to be hung, as it has latex in it, and the length will shrink in the dryer.

    Just keep an eye on your hand.

    Back to the pump thing: I kind of understand pushing them before LE therapy schools were established in the 1980's and now there are more therapists, but I sure don't understand Linda T Miller, PT DPT pushing a high pressure pump NOW. 

    She's right here on bc.org, in ask the expert, 2008, telling women they don't have to wear compression for life....

    http://www.breastcancer.org/treatment/planning/ask_expert/2008_05/question_40.jsp

    Linda T Miller, "Dr" Miller, before she had her DPT (and I've discovered you can get one on-line from "regionally accredited schoools")--was known for weekend wonder classes, telling women to weight lift and throw out their compression garments, and not believing in MLD, and now she's decided that the future, for her, is in marketing her high pressure pump. http://www.changetheirworldtoday.com/  My favorite is how she says it's evidence based: no studies that I can find. NONE.

    So, I agree with Dr. Feldman--and he reportedly caught grief from the pump companies for his talk--that pumps should be used after CDT and along with it. 

    I've also seen some recent studies on genital LE caused by pumps.

    And Carol's story of the woman with the pump in the closet, and the swollen hand and no benefit from treatment, just sums it up.

    They had the flexitouch people come to my CLT course and demonstrate it, and the hand piece is "one size fits all"

    I think I should probably start a new thread, and not hijack this one.

    Kira

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  • Ginger48
    Ginger48 Member Posts: 1,978
    edited August 2012

    Thanks, Kira. My sleeves are from lymphedeva and say to put them in the dryer in a lingerie bag.No one has ever suggested I do anything besides wear the sleeve and do some MLD to keep the lymph moving. My LE therapist actually just dismissed me. She was seeing me for my frozen shoulder and lack of range of motion and I have met those goals. I guess time will tell if I will do ok on my own...

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  • BeckySharp
    BeckySharp Member Posts: 935
    edited August 2012

    Kira--I think Feldman did mention that the use of the pumps did sometimes cause genital LE.  Do you remember if he did or did not Carol?  Or am I dreaming it?

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

    Just so as not to confuse this issue, it's LEG lymphedema pumps that have been implicated in causing genital LE.

    BUT, some pumps (those with fewer chambers, no chest clearance process, and/or higher compression) can cause a fibrotic "donut" around the top of the arm if they push the fluid into that area and there are no nodes pre-readied to receive it. Then the fluid hangs around there, causing fibrotic build-up in that area. If that persists, it can further block lymph flow in the arm--which is obviously a very, very bad idea.Frown

    So, if you use a pump, care is essential. Research the available products, talk to more than one therapist about them (it's not impossible for a therapist to have a contract with a pump dealer to handle only their brand--and that is clearly not to your advantage), ask for a demo, and look at the available studies. Use it only as instructed by your therapist, and check in with her/him often to be sure no problems are developing. It's not a substitute for self-MLD, it's a help--you still need to clear your nodes before and after use. And it's not a substitute for wearing garments, or careful skin care, or exercise (now wouldn't THAT be nice!LaughingUndecided)

    Just for the record (since it might sound like I'm dissing all pumpsSurprised), I have one myself. I use it for flares rather than daily, as I find being tired down for an hour a day next to impossible in my situation. Others use them daily over long periods of time with no problems and a lot of benefit. You just have to be smart--it's not a "magic bullet."

    (Hmmm, I just looked at the title of this thread and I can't remember how we got off on pumps. Did I do that? Sorry!)

    Be well!
    Binney

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  • brazos58
    brazos58 Member Posts: 261
    edited August 2012

    Hi Everyone

    I have been wearing sleeves/gloves since last fall during the day, just on my right arm.... off at bedtime. I have not seen a single soul out there... either. 

    I wear Lymphadiva's and get the funky LotusDragon...its beautiful...and the midnight lace... and the paisley...starting a collection. Funny as these are the most feminine things I wear when in T shirt and Denim/ Birkenstock mode... pretty much my only mode. Now if I can just find my hoop earrings!

    Most people think I have a tat.....some say " Oh I love that! I want one"  I leave them be clueless...

    I am braving going flat and dancing with beautiful sleeves and gloves. Its Real. Its Me. Its doable.

    Peace to you All

    xoxoxo

    brazox

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  • paty158456
    paty158456 Member Posts: 12
    edited August 2012

    Brazos58, thanks for the tip on the Lymphadiva design choices. My lymphadema has been getting worse and even in my hand.  I have been fighting wearing compression garments during the day, especially at my workplace.  My cancer is not widely known and the one time i wore the garment at work everyone was asking me "what happened" as if i hurt my hand. Are there hand gloves that go with the sleeves?

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  • Binney4
    Binney4 Member Posts: 8,609
    edited August 2012
    Brazos, I love your post.Smile I even love the denim and Berkies and the hoop earrings!Cool Dance, dance, dance!Kiss
    Binney
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  • kira66715
    kira66715 Member Posts: 4,681
    edited August 2012

    Paty, Lymphadivas only make gauntlets, but Juzo sells colored gloves, so you could match them.

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

    paty, Lymphedivas designs have matching (or color coordinated) gaunlets (fingerless gloves), but they don't make full gloves. You can, though, get colored gloves that will coordinate with them from several other garment companies. Juzo has a few colors, and Gottfried and Barton-Carey have a wide range of colors. Juzo also has some "tie-dye" sleeves that are fun.

    Here's information on garment makers, with links to all of them:
    http://www.stepup-speakout.org/Lymphedema_garments.htm

    I hope you find some you can dance in too!

    Hugs,
    Binney

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  • vlnrph
    vlnrph Member Posts: 1,632
    edited August 2012

    I went to a state wide Survivorship meeting hosted by the Marquette University School of Nursing earlier this summer and wore a glove as a "badge", hoping someone would ask about it (no one did).

    Prior to that, after a water aerobics class last spring, I was donning my sleeve when another gal said she helps her mother put one on every day so that started a conversation. 

    The Juzo samples at the Ohio conference looked pretty cool but I think my next purchase will be black! 

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2012

    Sorry, back on the pump issue - Becky, yes Feldman definitely mentioned the pump can cause genital LE, but I think he said if it is used with bilateral leg LE. Carol will have to confirm. He also said that using on one side of trunk can cause LE in opposite side of trunk.

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  • vlnrph
    vlnrph Member Posts: 1,632
    edited August 2012

    I just looked at my notes on pump use again and was reminded that the fluid transport may not result in large protein molecules being mobilized so that diminishes the benefit.

    It was also mentioned that duration of use or pressure level applied were not related to incidence of genital edema. 

    The case report of the 50yr old female with persistent buttock edema after leg treatment was also interesting. Her podiatrist "finally referred for CDT"...

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2012
    Vlnph, I got that wrong? I thought he said it could if used with bilateral leg LE vs single leg. I have to check my handout - certainly don't want to report inaccurate info.




    He did say that about truncal LE, though, right? That's why I asked him the question about my friend using as only mode of treatment due to poor insurance and lack of ability/knowledge to do self MLD - that really alarmed me. He obviously thought if the pump was going to be used, it should be in conjunction with other forms of treatment. In the absence of any other it was better than nothing. He thought it was interesting my friend's insurance would pay for an expensive pump but not for treatment. Yes, the main reason it should not be only method of treatment is because it does not move protein, just fluid.
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  • carol57
    carol57 Member Posts: 3,567
    edited August 2012

    A pump moving fluid without protein certainly suggests problems if the pump is the sole treatment.  But it also makes me wonder- if the pump is not moving protein, what is it about MLD that DOES move the protein + fluid?  Both methods nudge the lymph mechanically, i.e. not relying solely on the action of muscles pushing against lymphatic vessels.  Why is the effect different with the pump compared to with MLD.  Yooo hoooo, Binney...

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

    Carol, was he talking about all pumps or just some pumps? There are pumps whose action is to...well, to PUMP. They squeeze, or wring, the fluid from the tissue, forcing it up toward the axilla. They are not stimulating the lymph vessels, they're wringing out the fluid. When you turn the pump off the fluid will return because:

    1. it never returned to the lymph vessels and from there to the nodes and from there to the circulatory system, and

    2. it left behind the big protein molecules, which act as thirsty fluid magnets and draw the fluid back into the tissue.

    So you don't want a pump that wrings, you want one with limited pressure that moves sequentially in small increments. 

    I should add that there are times when the wringing type of pumps are called for (per studies by Waldemar Olszewski, et al). When LE has gone untreated for a long time (years), the damage to the tissues can include the obliteration of the lymphatics (lymph vessels). If that happens in the legs, patients can't walk because their legs are too large and heavy, and MLD doesn't work because there are no lymph vessels left to stimulate. In that case a wringing-type pump with high pressure can squeeze the lymph fluid out of the legs (into the abdomen, unfortunately--it's a trade-off, not a solution), and the person can walk again. All of which is a cautionary tale, to say the least: don't neglect your LE!

    Be well!Smile
    Binney

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

    Binney, he did discuss older vs. more modern, more technologically advanced pumps, but whether he said there was a protein-movement difference, I do not recall.  I think I shall send him an email asking to clarify.  Thank YOU for that explanation!

    Carol

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  • paty158456
    paty158456 Member Posts: 12
    edited August 2012

    Has anyone heard of using ultrasound for lymph fluid drainage? A few months back (before I knew my cancer came back) my lymphedema therapist used it on my arm and said there has been new research on it being beneficial. I will be starting therapy up again in a couple of weeks and not sure if I should let her do it.

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