Standard for lymphadema prevention

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faithhopenluv
faithhopenluv Member Posts: 323
edited June 2014 in Lymphedema

I'm looking for some validation of what is the norm for preventing lymphadema. I went to a specialist this week, and don't have a great confidence level so far. Yes, I know I'm at risk (I've had 21 nodes removed). I have no visible signs and two areas of my left arm that were millimeters larger than my right (I'm right dominant). She said she wouldn't classify me as having lymphadema but believed if she showed me manual drainage that slight swelling would go away.



But, she ordered class2 garments for me, which appear to be for moderate or severe LE. She wants me to wear a full sleeve and gauntlet every day, forever.



I am in good health, 41 and not overweight. Does this seem to be the standard recommendation?

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  • Mooleen
    Mooleen Member Posts: 185
    edited April 2012

    I had 22 nodes removed. I went to a lymphadema therapist and was given exercises. Also I got a compression sleeve that I will wear when flying. Apparently the pressure in airplanes can be a factor. I do not have any visible signs and I hope I never do. I can't imagine wearing a compression sleeve forever!

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

    Faithopenluv, for LE prevention, it doesn't make sense to put you in compression, class 2 all day.

    There was  study, done by Nicole Stout, where she measured all women post op on a perometer--a very sensitive laser measurement of volume--and if their arm increased 3% she put them all in sleeve/gauntlet--class 1 Jobst--and most women resolved their slight swelling. But, she didn't have a control arm, who didn't wear compression, and great researchers, like Jane Armer, think a lot of women swell post op and it's not LE. So, based on that slightly flawed study, the National Lymphedema Network and others are pushing for early diagnosis.

    So, maybe she's following the Nicole Stout protocol??? 

    But most people would consider you stage 0 to stage 1 LE and teach you manual lymph drainage, and get you a sleeve/gauntlet to wear if you are exercising, vey active, have symptoms.

    This is treatment, not prevention.

    So, what doesn't make sense is that she doesn't think you have lymphedema, and yet wants you in compression all day.

    You might want to clarify all of this with her, and if you don't trust her, time to find someone you can work with:

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

    Let us know how you make out

    Moleen: we were posting at the same time: many women on these boards wear compression all day and night. It all depends on what we need to do to keep our lymphedema under control. 

    Kira

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  • Momof2inME
    Momof2inME Member Posts: 683
    edited April 2012

    Hi,

    I have very mild LE since surgery. I have 2 sleeves, a gauntlet, and a full glove. I wear them when I can feel my upper arm or fingers swelling. I cannot imagine wearing them forever either nor did my PT suggest it. My LE physical therapist said to wear them when flying, during my radiation treatment, excercising, or when I felt I needed it. I guess if it were me I would either get a 2nd opinion or ask for further clarification of the "forever". Good luck. Let me know how it goes as it's always good to compare notes.

    {{HUGS}}

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

    faith, the Class II doesn't make any sense to me either, and too much compression has been known to cause problems rather than solve them. I don't get it, and I too would suggest further clarification and/or a second opinion. We need to trust these people, because unfortunately it isn't a problem that's going to disappear anytime soon.Frown

    Please let us know what you discover.

    Gentle hugs,
    Binney

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  • Binney4
    Binney4 Member Posts: 8,609
    edited April 2012
    Oh, and I wanted to add that your disgruntled sheep avatar made me laugh out loud. Thanks for that!Laughing
    Binney
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  • faithhopenluv
    faithhopenluv Member Posts: 323
    edited April 2012

    Thanks everyone! I feel like I went in reasonably informed, I didn't have any noticeable swelling, but do still have numbness and a little tightness since surgery. I also know that something or nothing could trigger LE at any time and wanted guidance on a sleeve for flying and exercise. She was very clear that she was advising every day indefinitely. When I said I wasn't expecting that she shifted to as much as tolerable.



    She ordered the sleeves, and I just got the receipt in the mail which noted that she ordered class 2. I have an appointment Monday to pick them up/learn how to put them on and will ask her then. Would too much compression possibly cause LE?



    Thanks Binney, it's a play off of Dave Matthews song that references a Tennessee lamb. Breast cancer has made me a fightin' lamb.

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

    Fightin' Lamb (love it!), yes, too much compression on your arm can cause swelling in your hand. I know this because that's what happened to me -- my first (inadequately trained) therapist got me a Class 2 sleeve before an airplane flight and my hand blew up.

    If your therapist is saying that you have very early stage LE (stage 0, or pre-clinical) than a sleeve and glove or gauntlet to use for travel, exercise, or anytime your arm feels "funny" would be the current standard of treatment. Same goes for prophylactic use if you're trying to avoid LE but don't have it yet. In either of those two cases, a Class I (20-30mm/Hg), or even a 15-20mm/Hg, would be the usual choice. Even many people with established LE don't wear Class II (I don't, for instance). We're all different, but if there's some reason why you require a Class II for prophylactic use (or even for Stage 0-1), she should be able to explain it to your satisfaction. 

    And on the other hand, if these garments are coming from Europe they may use the European system, where a Class II means a compression level of 23-32mm/Hg, which could be reasonable (although the Class I, which is 18-21mm/Hg might still be a better option). So that's another point you might want to clarify with her.

    Perhaps this page about proper fit of compression garments might help:
    http://www.stepup-speakout.org/proper_fitting_of_lymphedema_garments.htm

    Clear as mud, huh? Nothing about LE is simple. Do let us know how it goes.
    Be well!
    Binney

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  • faithhopenluv
    faithhopenluv Member Posts: 323
    edited April 2012

    So many of my Drs/specialists have told me to stay off the internet, where would I be if I actually listened? I'm not out to self diagnosis or treat, but I have learned that I can't blindly trust someone just because they have some initials at the end of their name.



    Have a great day!

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

    Faithhopenluv, this site literally saved me. My doctors were clueless about lymphedema.

    Good sites are where we learn the information we need, yeah, there are scary and not so good sites, and sites that masquerade as patient sites and are really advertisements, but this site, this forum is a lifesaver and has information that IMO can't be found elsewhere.

    Kira

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  • kawee
    kawee Member Posts: 324
    edited April 2012

    Don't know where to ask this question, but I have developed lymphedema after 3 years post treatment.  It started along my breast and underarm.  After a month of PT massage, it went away but has come back in my elbow and in my forearm.  I am back in therapy and have been fitted with a sleeve.  Compression 15-20.  Was doing well and was feeiing quite a bit less pain and yesterday I helped my husband lift and carry something really heavy.  Today I woke up with more pain and swelling around my elbow and now I have alot of fluid in the top of my hand which I haven't had before.  My questions are:  Can the sleeve push fluid into your hand and could lifting something heavy be the cause of the add'l pain and swelling today?  Thanks.

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

    Kawee, yes to both questions. Is this a therapist with at least 135 hours of specifically lymphedema training beyond her PT or OT certification? If not, you might check out another therapist near you. Here's how to find one:
    http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm

    DON'T WEAR THE SLEEVE AGAIN until you get help for the entire limb. You can do some things that will help, like elevate your arm (with support) as much as possible, avoid straining it further, stay REALLY well hydrated (helps dilute the lymph fluid and keep it moving), and pause from time to time to take a few deep abdominal breaths (stimulates the largest lymph vessel in our bodies).

    The standard for treatment will be a therapy intensive. For information about that, follow the links on the page below to both Manual Lymphatic Drainage Massage and Wrapping/Bandaging:
    http://www.stepup-speakout.org/treatments_for_lymphedema.htm

    Please don't settle for less, as it's important to get the swelling under control so you can keep it that way moving forward.

    I'm so sorry this is happening, kawee, but I just want to encourage you that as you get it under control and learn how to keep it that way it gets better--honest!Smile

    Tell us how we can help.
    Gentle hugs,
    Binney

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

    Kawee, here's an article on why you need hand compression with a sleeve. It's from the lymphadiva's site:

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

    You'll read on there how you want to avoid lymphedema in the hand--and a glove may be the best bet for you right now, but at the very least, a gauntlet.

    15-20 mm is below class 1 and is usually only used for prevention for flying or with people who have most swelling in their hand, and don't need much in the arm.

    When lymphedema progresses, it is just so disheartening, but you can get it back under control, with a good therapist and manual lymph drainage and wise use of compression.

    It's just so upsetting when it flares up like this.

    Let us know how you're doing.

    Kira

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  • kawee
    kawee Member Posts: 324
    edited April 2012

    Well, I checked the list and she is on it.  It's a Lymphedema Clinic on the central coast and that's all they do.  I just started going to this place last week.  I am doing the manual massage they taught me.  She is going to start her therapy this coming week.  I see her Tuesday.  I won't wear the glove til I see her and will follow your advice on the other things  This is such a drag!!  She wanted to give me more compression, but at the time I couldn't stand the pressure, so we went lower for a while til some of the swelling went down.  It doesn't look like all the much at the elbow, just really hurts (course I have Lupus so I'm already sore), but I can really see it alot in my hand.  Thanks for all your advice!!! 

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  • kcshreve
    kcshreve Member Posts: 1,148
    edited April 2012

    Kawee,  With LE there can be discomfort or pain with even a small amt of visible swelling.  And, as I understand it, there can be an increase in retention before swelling actually shows, so the visible swelling is not always the marker. I'm glad you found this site to get some solid answers. 

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  • Galsal
    Galsal Member Posts: 1,886
    edited April 2012

    faithopenluv...even NCIs recommend this site as a place to go for information and research about BC.  you've the attention and feedback from some wonderful people on this topic....feel good about that!

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

    Kawee, with lupus, you need to be really careful with compression, as you may have vasculitis and vascular insufficiency.

    It's never easy, is it?

    So, with the underlying inflammation of lupus, and possible arthritis, it complicates the LE treatment. Hang in there, and let us know how we can help.

    Kira

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  • kawee
    kawee Member Posts: 324
    edited April 2012

    Thank you all so much for your support and advice.  My hand is so much better today, still a little fluid that I can see but ALOT better than yesterday.  Have kept the sleeve off.  I'll talk to my rheumatologist tomorrow about the vasculitis and compression and get his advice before proceeding.

    Thanks again!!!

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  • faithhopenluv
    faithhopenluv Member Posts: 323
    edited May 2012

    I met with a 2nd LE therapist today. It took awhile - I needed to get another referral and then had to postpone an apt because my counts tanked so badly after my last chemo. But I feel much better about this apt. She doesn't believe I need any active treatment. Her method was so much more scientific. The 1st therapist basically just eyed where to place the measurements on each arm, where this one marked out measurements on adhesive tape anchored by my wrist bone. The data was entered into a calculation with a clear result.



    Thank you for your advice!

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