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Self Care--All things MLD

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lw422
lw422 Member Posts: 1,404
edited October 2022 in Lymphedema

Edited since LE diagnosis confirmed...

I have seen a LANA-certified PT and gotten my fist full of handouts, plus advised to buy a low-compression sleeve "just in case." I had an hour of hands-on instruction for self Manual Lymph Drainage but I still feel like somehow I'm not doing it right.

I get more confused by the hundreds of instructional youtube videos; some of those people obviously don't have a clue but are allowed to post questionable information. I try to focus on the videos posted by large medical facilities (MD Anderson, Mayo, etc.) but even those can vary widely in technique. How critical is the technique??

Can anyone comment on the varying massage methods, such as "strokes" or "small circles"? I see the Joann Rovig videos where she uses a longer "stroking" motion, sliding across the skin... but many of the videos such as MD Anderson say "don't slide the hand across the skin!" So confusing.

For some reason, I have the most difficulty with the supraclavicular nodes at the base of my neck; I just can't seem to "get it." Should I be stretching that skin, stroking, or WHAT? I also have trouble with the inguinal (groin) nodes and that "scooping" motion. I wonder if the Lebed Method of simply standing and lifting one leg bent at the knee and putting it back down is sufficient to clear those??

I will appreciate anyone's input and I'd love to hear your personal "technique." Any videos or images of correct techniques will be appreciated.

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Comments

  • parakeetsrule
    parakeetsrule Member Posts: 605
    edited February 2022
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    Do you have lymphedema or not? If not, you don't need to do any of this. Just live your life. There are no scientifically confirmed ways to prevent lymphedema, so don't worry about it unless you actually get it.
  • minustwo
    minustwo Member Posts: 13,157
    edited February 2022
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    LW - since you've had the 'new' lympohovenus (sp) surgery & 32 nodes removed - I totally understand & applaud your preventative concern - whether or not you've been diagnosed. As I've posted elsewhere, I have very mild breast & truncal LE that I'm determined won't progress. I don't do constant MLD, but I watch carefully for swelling and treat as necessary. I try to do exercises every day. I immediately clean any scrapes or cuts & apply antibiotic ointment. I carry antibiotic pills when I travel. I also always wear sleeves and gauntlets for flying & repetitive activity, as well as not allowing sticks & BP on either arm. Since my port was removed, that latter is my main precaution - and boy is it a PITA to find someone who who will do blood draws in my ankle or shots in my thigh. Not to mention anesthesia for things like a colonoscopy.

    I'm not one for videos on line. My first LEPT used mostly just fingers. The new one I've seen once so far seems to use whole hands. I really hope Binney will see this & weigh in since she's our guru.


  • lw422
    lw422 Member Posts: 1,404
    edited February 2022
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    Parakeets Rule--I have not been diagnosed with LE but I am at a high risk for it. I'm interested in discussing proper methods of manual lymph drainage and self-care for LE. "Knowledge is power." Do you practice MLD? If so, I'd be interested in knowing what is effective for you. Thanks.

  • lw422
    lw422 Member Posts: 1,404
    edited February 2022
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    Hey -2. Thanks; I suppose being done with active cancer treatment has me obsessing about LE. I'm still mad that I had 32 freakin' nodes removed and NONE of them was cancerous... but that's spilled milk.

    I notice that since I've started doing the Lebed Opening I have less discomfort in my surgical axilla (not nearly as much tightness), so I wonder if I have a bit of truncal LE. The LE PT didn't think so but I don't have a lot of confidence in the PTs I have seen so far.

    I know it's difficult to learn from some videos, but I still watch them to try to find any nuggets of wisdom. :biggrin: I'm hoping people who successfully manage their MLD will post about their own "technique" and success. Hope you're having a pleasant Sunday.

  • moderators
    moderators Posts: 8,219
    edited February 2022
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    Hi ladies! You may wish to check out the main site content about Reducing Risk of Lymphedema and Lymphedema Flare-Ups. This article includes information to help reduce lymphedema risk before and after surgery. Hope this helps!

    The Mods

  • RollWithIt
    RollWithIt Member Posts: 4
    edited February 2022
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    Hi LW422. I share your resolve to keep LE at bay and your confusion with the information out there. Soon after my surgery I developed cording, which was my introduction to the concept of lymphedema. I had seen it referenced in the BC literature provided by the nurse navigators, but didn't really understand the implications. I didn't get a LE PT appointment scheduled until after my radiation, so I worked quite a bit on my own to increase range of motion so I could "assume the position" for rad. One web site I found helpful is Breast Cancer Haven, a UK organization. They have a set of videos. Search on "breast cancer haven" and lympoedema the facts" (sorry it won't let me post the URL). I started doing the roughly 7 minutes exercise routine once a day and continue to do it daily. It helped me gain my range of motion and was also a nice way to see some friendly faces while working from home. I did manage a plane flight this past October from the west coast to the east coast and back (one layover each way) and didn't seem to suffer, but I was very nervous, continued pumping my hand and raising my arm, kept luggage light, etc.

    I do seem to have some mild breast and truncal LE (noted a bit off-hand by my BS, I'm not sure I would call it a diagnosis). After lots of research, I decided to do what felt right to me as far as massage/stroking. When I feel a pain point or feeling of fullness I do circular motions lightly (or more heavily if I think it is scar-tissue related), do deep breathing, and a bit of gentle stroking to guide flow across to other breast and down side towards lymph nodes in leg area (I've never kept this up for more than a minute or so). If I'm lying awake at night, I'll do gentle massage, counting rotations, and find I often fall asleep. Sometimes I'll wear a compression tank during the day and/or night that I got at Wear Ease (suggested by someone on this site). Other times is it more comfortable to wear a light cotton t-shirt or nothing at all.

    Everything I read nowadays encourages exercise, but in a mindful manner so the muscles do not get inflamed and start the negative feedback loop. Several exercise resources I've found are the book Moving Through Cancer, a dvd Strength & Courage, and some JHU exercise videos (which seemed a bit advanced for me), besides the BC Haven videos. My problem is figuring out how to judge progression. After doing the exercises in Moving Through Cancer, I usually felt something such as tingling, etc., but I didn't know if it was a warning sign or only the nerves growing back (the numbness under my arm has been decreasing). To be caution, I stopped until the feeling went away (usually a day or two), then started back at square one. This didn't seem to be getting me anywhere, so my current approach is to start with those movements that work well and slowly add a weight component (such as increasing reps on incline pushups) and focusing on functional exercise. Also, I walk, jump, jog, and dance around a lot. It is all an experiment for me, with me.

    Thank you for bring this up. I'll be interested in what others might add.

  • lw422
    lw422 Member Posts: 1,404
    edited February 2022
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    Mods--thanks for the link; very helpful info.

    RollWithIt--love the nickname! (Makes me think of the Steve Winwood song.) Thanks very much; what a great first post! You are definitely a new asset to this forum and I appreciate your contribution to this discussion.

    Have you seen or tried the "Lebed Method"? I found a used DVD on Amazon for cheap and though the content is amateurish and semi-annoying, the "method" seems to really work for me. It's easy and relaxing. There is a wealth of information on the "Step Up, Speak Out" website if you haven't seen it... http://www.stepup-speakout.org/

    I'll be checking out the BC Haven website and info; thanks so much.

    I know all of this just has a learning curve, and what works for one person may not be as effective for another. I suppose I'd like to hear if there are any definite no-nos as far as MLD, such as applying too much pressure, etc.

    Thanks again for contributing and I hope we get lots of responses. Take care and be well.

  • minustwo
    minustwo Member Posts: 13,157
    edited February 2022
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    I did send a PM to Binney. She doesn't log on as often anymore, but I expect she'll chime in sometime this week.

    LW - my new LEPT uses the Vodder method. I'm sure you've already found this link for the LANA site, but just in case.

    https://www.clt-lana.org/


  • lw422
    lw422 Member Posts: 1,404
    edited February 2022
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    It will be nice to hear from Binney, -2. I imagine she is burned out on helping LE newbies after all these years, but she is such an asset.

    And yeah, I've poked around the LANA website... mostly looking at the certified PTs in the Houston area. Thanks for the link, though... others might find it useful.

    Exactly what is the "Vodder method?" Does that use the longer strokes (like Joann Rovig)? The MDA PT uses the short, gentle skin-stretch method. In fact, there's an MDA video that follows exactly the handout I was given...


  • binney4
    binney4 Member Posts: 1,466
    edited February 2022
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    LW422, brava to you for your determination to find ways to reduce your LE risk!! And I'm sorry there's such a mess of "information" out there that can't be trusted. Sure doesn't make this any easier! (On the other hand, it's better than NO information, which was what we had in the not-so-distant past. Progress--sigh!)

    Personally, I'm with you on the effectiveness of the Lebed opening exercises. They're simple, even a bit graceful once you get the hang of it, and they work. The reason they do is that they follow the gentle stimulation pattern, speed and direction of a competent Manual Lymph Drainage routine, and they make it possible to avoid questions of how to stroke, how much pressure to use, and what order to go in. (I also agree with you that the video is semi-annoying--I usually play it with the sound turned off. You can use your own music.) I also like the Lebed because my LE is bilateral, so there's no problem of moving fluid from one affected side to the other. (In the MDA video you posted above, for instance, it appeared the woman demonstrating the technique had bilateral mastectomies, so bilateral risk, in which case you would NOT want to move fluid from one affected side to another at-risk side. Just something to think about.)

    Of the MLD videos on-line, the ones I like are on Youtube from the University of Michigan. I'm sure there are others that are workable, but those are user-friendly and not as involved as the MDA video. They also stress the importance of a very gentle touch.

    As for your indecision about whether or not you actually have some truncal LE, I'd suggest you keep looking for an LE therapist you can trust. This is a chronic condition that calls for an on-going relationship with someone who can be there for you as new questions arise. A well-trained, experienced LE therapist is golden!

    It sure can be overwhelming to be faced with all the possible triggers and risks for LE, but I promise it gets easier as you develop new habits and awareness that become just another part of your routine. Definitely worth the effort!

    Gentle hugs,
    Binney

  • lw422
    lw422 Member Posts: 1,404
    edited February 2022
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    Hi Binney and thanks so much. Like so many others, I expected to be able to get back to 'normal' after cancer treatment but unfortunately that is not to be. The medical establishment should advise patients up front that treatment is going to cause almost as many issues as it helps, but I suppose there's really no point in heaping bad news on top of terrible news for someone still shell-shocked by a diagnosis.

    It's too bad that the Lebed DVD wasn't done well; it really is a valuable routine. I'm not to the point of turning down the sound because I still need the cues. It would have been great if she had stated how many reps for each step, and possibly a count to help a newbie get an idea of the speed for each motion. Instead the idiot in the background keeps talking to her and distracting from the flow. "Dancing!!!" SickTired

    This young woman has exercises similar to the Lebed routine, but does not include the knee-lift for the inguinal nodes... (actual exercises begin at 2:17).


    Bless you for having to deal with bilateral LE. That is the main reason I am questioning a prophylactic mastectomy on my "good" side. I had planned on surgery later this year, but the more I learn about LE the less inclined I am to have any elective procedure.

    I may have seen the U of M videos; heaven knows I've watched MLD vids until cross-eyed. I will look for them again, though.

    The plastic surgeon who did my lymphovenous bypass and surgical close said my axilla swelling and tightness could still be edema and tissue settling from surgery (6 months later). I suppose he could be right, but I know the area did get better after I started with the MLD and gentle exercise. I'm keeping an eye on everything (a bit obsessive really). Wish I could just relax and go with the flow for a change.

    Thanks again for the advice, and for being so willing to help others who are lost in the maze of poor/no information. I hope all is well with you.

  • lw422
    lw422 Member Posts: 1,404
    edited March 2022
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    Does anyone here know what happened to the website where Joanna Rovig's original videos and information were? There are many links to that website on this board that are broken now; apparently the website has been shut down. I see a couple of the Rovig videos on youtube (she has a channel) but they don't seem very comprehensive. I wouldn't mind buying her original videos but I can't find them anywhere.

    If you have the "original" videos, can you comment on whether are they the same as the youtube stuff?

  • lw422
    lw422 Member Posts: 1,404
    edited March 2022
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    Seems like I've been making research of LE treatment my life's work lately, trying to figure out the "best and easiest" method(s) of MLD. I know this varies from person to person but I hope others will contribute to this thread about what works for them. I found a somewhat abbreviated method of drainage which is called 'clearing and reabsorption' on the Healthline website. It seems a lot less complicated than some other methods and there's not a lot of detail included. Link to the entire article from Healthline, https://www.healthline.com/health/how-to-perform-l... . This technique for the supraclavicular area is interesting...

    To clear the supraclavicular area:
    Begin by lying on a comfortable, flat surface.
    Cross your arms on your chest, with your hands resting just below the collarbones.
    Then lift your elbows slowly. The muscle action is as much pressure required to prepare the area to flush lymphatic fluid.

  • lw422
    lw422 Member Posts: 1,404
    edited June 2022
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    Not sure if anyone is interested, but this website appears to have the Joann Rovig videos. Click on the "Lymphedema Videos" tab on this page... http://www.lymphedemachallenger.com/lymphedema-videos/

  • minustwo
    minustwo Member Posts: 13,157
    edited June 2022
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    lw - Say Hey!! Of course we're interested. Thanks for posting. My son is visisting this week so I'll check after he departs.

  • lw422
    lw422 Member Posts: 1,404
    edited June 2022
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    Hey -2! Enjoy your visit with your son and keep cool! Hoping we'll get some rain this week.

  • lw422
    lw422 Member Posts: 1,404
    edited August 2022
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    Hi everyone. I'm sporting my very first "wrap" today; only 2 more hours till I can take it off!! I finally have a LEPT that I like so I will be seeing her occasionally as needed.

    I wanted to post this relatively new video by another PT; a short exercise video similar to the Lebed movements for LE drainage. I've only been doing this one for a few days but it is a short routine and easy to fit into my day.



  • minustwo
    minustwo Member Posts: 13,157
    edited August 2022
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    LW - so glad you finally got a good LEPT. You're a trouper with the first day wrap. Thanks for posting the video. I'm looking forward to watching it.

  • lw422
    lw422 Member Posts: 1,404
    edited August 2022
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    Hey -2. Seems like our wish for rain finally paid off; we've been having "scattered showers" for a couple of weeks now! Hope you are well.

    Yep; I finally got to hear the words that I've dreaded... I have LE. So far it's mild. I learned how to wrap yesterday and my hubby videoed the process so hopefully we can do this ourselves. When I unwrapped this afternoon my arm was soft and almost normal. And so, it begins.:-s

  • minustwo
    minustwo Member Posts: 13,157
    edited August 2022
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    LW - Oh cr*p. Hopefully it's just one arm?? Will you have to wrap full time? Certain hours every day? Can you eventually expect to use wrapping just to reduce intermittent swelling and manage with sleeves most of the time? You're in my thoughts.

  • lw422
    lw422 Member Posts: 1,404
    edited August 2022
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    At this point I really don't know, -2. The therapist just demonstrated how the wrapping is done and said I'd need to order a sleeve. She said I should practice wrapping and get used to wearing the bandages for a few hours each day. I'm not having the full CDT treatment since I am Stage 1 and can elevate/exercise and get my arm to return to normal. My appointment Tuesday was just to pro-actively learn bandaging. I think each of us has to eventually figure out the best methods for control on our own so this is new territory for me. I'm glad I have already learned self-massage and exercises; now if I could only get into a better place mentally for this "life sentence." Oh, and yes, it's just my right arm (mastectomy side) and a bit of truncal in my right axillary.

    I have an appointment with a LE specialist/surgeon at MDA in 2 weeks. I want to discuss any treatment options he feels might help (more bypasses, etc.) and of course whether the additional surgery will be covered by insurance/Medicare.

  • rah2464
    rah2464 Member Posts: 1,192
    edited September 2022
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    Thats interesting. I guess I am stage one but was never shown wrapping at all. Just directed to sleeves and gauntlets. And a flexitouch pump for use. Doesn't seem like there is a standardized approach thats frustrating.

    LW hope the surgery goes well and doesn't bother the other side. Good grief.

  • lw422
    lw422 Member Posts: 1,404
    edited September 2022
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    Hey Rah. Actually, I requested a PT session to learn how to wrap; I like to be pro-active with this stuff. I have to say, it wasn't nearly as awful as I imagined. I'm bummed to finally have a lymphedema DX but it wasn't really a surprise. Wow, you got a pump at Stage 1? I wonder how they determine who gets those.

    I don't have any surgery scheduled yet; just a consultation with a LE specialist to discuss possible options. I had already decided to not go forward with the prophylactic mastectomy due to LE concerns. Hope you're doing well.

  • lw422
    lw422 Member Posts: 1,404
    edited September 2022
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    Well, this is interesting. I found this Aussie PT's Youtube channel and was surprised to see her instruction on a new technique for MLD. According to her, the method of soft-touch massage was found to be not as effective as a firmer technique. She claims this is based on a research study from 2019. (I'm still trying to find the research paper.)




    And here is another of her videos. She doesn't demonstrate very well as far as recommended stroke and timing. Most interesting is her claim that the fluid should be moved to the ipsilateral (affected side!) axillary, even if all nodes have been removed. Hmmmm. If this is effective, it certainly would shorten MLD time since the fluid isn't worked across the chest or back.



    I am posting these videos for information purposes only. I have not found verification of the research study or that her claims are valid but I'm doing some digging. Links she provided are not specific to this technique and have more to do with lymph node mapping.



  • minustwo
    minustwo Member Posts: 13,157
    edited September 2022
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    Thanks LW. I'll be looking forward to the fruits of your research.

    As for further surgery - I have the Allergan 410 implants. I have no sign of problems, but still they have a 'shelf life'. So eventually I'll have to go back & have them removed or replaced.

  • rah2464
    rah2464 Member Posts: 1,192
    edited September 2022
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    lw not sure exactly how you qualify for the pump. It was close to end of year so I had already maxed out my out of pocket but it was still pricey at that. Maybe I qualified because the swelling increased in my affected arm and was measurably present in truncal area.

    Thanks for the video research I will delve into it for sure.

  • lw422
    lw422 Member Posts: 1,404
    edited September 2022
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    Just an update to the "new technique" videos I posted above. I managed to find this research paper posted on the Kloss Training website... https://klosetraining.com/wp-content/uploads/2021/03/2021-Personalizing-Conservative-Lymphedema-Management-Using-ICG.pdf?fbclid=IwAR1BuBoFqtx8zaXmFQbN7yLdbgxpyp25blfwAhtEVq1kvhUv_6Kx08A1bfA

    The research was done on Personalizing Lymphedema Management by Use of Indocyanine Green-Guided Manual Lymphatic Drainage. So it seems to me that it's basically a way for an individual to see the actual effects of MLD by having an injection of Indocyanine Green and the real-time visualization of where the lymph is moving during MLD. There are a few individual statements regarding use of a heavier touch and also moving lymph to the ipsilateral (affected side) nodes which still seems counter-intuitive to me. Other than the Australian PT videos above (and her Facebook group), I don't find other references to the "new technique" for MLD.

    Here's a webinar about the study in case anyone has a couple of hours to waste...


  • lw422
    lw422 Member Posts: 1,404
    edited September 2022
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    Hmmm. It seems that I am talking to myself and there's not much interest in All Things MLD. :biggrin:

    At any rate, I found another Aussie touting the "new method" of MLD so I will be asking my PT about this and will also email JoAnn Rovig for her thoughts.


  • minustwo
    minustwo Member Posts: 13,157
    edited September 2022
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    Oh no LW - we're reading. The research that you're doing is fantastic. Please don't stop sharing. And I'll be looking forward to what your PT says.

  • lw422
    lw422 Member Posts: 1,404
    edited September 2022
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    Hey -2. Thanks; I was making a lame joke and tried to edit my post since it sounds a little snarky-- but I got some stupid website error message so I had to leave it. I wish they would get this site fixed; I just know people get so discouraged when they try to come here for help. I hope all of this might be of help to someone because self-care is so important.

    One other interesting tidbit I've learned -- current findings are that performing MLD as a preventative to avoid getting LE is not effective and does not keep a person from getting it. So if anyone reading has no symptoms of lymphedema then pro-actively performing manual lymph drainage techniques will not prevent it. Wish I had read that months ago; I could have saved myself a lot of massaging!! (Of course, when I actually got LE I already knew how to do the basics, so the time wasn't totally wasted.)

    Since reading the findings of the Australian university I have started including my affected axilla in my massage routine and directing fluid to that area. I figure what the heck; maybe it could work. In all honesty, I don't see a lot of results from MLD and I'm willing to try just about anything that might help.