Lebed Method Video and/or MLD

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allisontom911
allisontom911 Member Posts: 425
edited June 2014 in Lymphedema

Good Morning gals, I just had a follow up PET/CT scan this week and got word I am NED. So back on track with my LE stuff. My arm and hand have been swollen lately and I have been very very uncomfortable, even painful at times. I did my video this morning, then entire video. Should I also do MLD after the video when I do the entire video? Do you wear your sleeve and glove doing the video and MLD?

Sorry for so many questions. I just want to get back on track again.

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

    Allison: NED!!!! That's great!

    The Lebed DVD does a good job of moving lymph--especially the opening segment. Personally, that's my favorite part, and I skip other segments (honestly--I fell off the Lebed wagon, and need to get back on)

    I wear my glove when I do the DVD. 

    I would think MLD afterwards would be most effective.

    Do you have a good LE therapist to help you, because this isn't "do it yourself" issues.

    I'm thrilled you're NED. Such great news.

    Kira

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  • cowgal
    cowgal Member Posts: 833
    edited September 2012

    I like the DVD as well.  For some reason, I was thinking that my LE therapist told me to wait 30 minutes between when you do exercise and start MLD.  I have assumed the Lebed DVD counted as exercise and waited but maybe if you ask your therapist they may think differently.  By the way, what does NED mean?

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  • BoobsinaBox
    BoobsinaBox Member Posts: 550
    edited September 2012

    No evidence of disease. Thanks for asking.

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  • Quail
    Quail Member Posts: 21
    edited September 2012

    I KNOW I need to up my excercise, and other than wine-bottle corks (!) the Lebed dvds seem to be the go-to thing for all of you.  What are they?  I've google Lebed, of course, but I wonder if there is a specific dvd that you all use? And can I buy it online or do you get it from your therapist?

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  • toomuch
    toomuch Member Posts: 901
    edited September 2012

    Allison - My LE therapist told me to do MLD then my exercises. She said then the fluid would have somewhere to move but more often then not, I do my exercises and then MLD! Great news on NED. Congrats!

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  • BeckySharp
    BeckySharp Member Posts: 935
    edited September 2012

    Quail--I purchased the Lebed CD on www.gohealthysteps.com.  I think they are on you tube but in pieces.  Maybe someone else will know.

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  • allisontom911
    allisontom911 Member Posts: 425
    edited September 2012

    I got my DVD off of Amazon.com. It is kind of a goofy video but I do the opening 15minutes and try and do the entire video 2-3x a week

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

    'Goofy' is a good way to describe it. I can't handle much more than the opening, but many, many people with LE find the video is helpful.  The more tools to choose from for managing LE, the better!

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  • dassi52
    dassi52 Member Posts: 206
    edited October 2012

    Kira,

    I have been following the different forums without too much personal input ever since I was diagnosed with LE (end of July)and first of all, I am full of admiration for you and Binney who take the time to respond to everyone. In the meantime, I have learned a lot about LE. (and am still learning)

    Everyone wrote about the Lebed method, but when I went to the website I found several kinds of videos. Which one is the best for LE? Please advise.

    This coming Sunday I am joining an LE exercise group that my LET leads. Will tell you all about it. By the way,my LE is only in the right hand (I am a righty... sigh) and hopefully will not go into my arm. I have been bandaging ever since it was diagnosed, because I have a problem with part of my hand that cannot bear the glove. Next week I will get an ultrasound of the area to see if the orthopedic surgeon can figure out what's wrong. After wearing these wraps, I am almost looking forward to getting a glove.... 

    Dassi52  

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

    Dassi, the one most of us use is the DVD "The Lebed Method, Focus on Healing Through Therapeutic Exercise and Movement." (Not exactly a catchy titleTongue out). It's here:
    http://www.gohealthysteps.com/store/?productID=3

    I'm really sorry you've had to be wrapped for so long and are having trouble with the gloves. Do let us know what you discover. We'll be rooting for you to "graduate" to a glove!

    Be well,
    Binney

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  • dassi52
    dassi52 Member Posts: 206
    edited October 2012

    Thank you Binney for your quick answer. I am first going to see what the exercise group consists of, and then decide whether to add Lebed to it. It's a little pricey with shipping to Israel, but then, in the scheme of things, it's not that bad either. We get 2 garments a year from the health fund, but only 83% covered so that does add up. Makes the video almost a steal! On the other hand, as a cancer patient (as long as I take medication - Arimidex) I don't pay anything for all the PT so that's good. It is just hard to get appointments because there aren't that many around. Having a few treatments each week like it's done in the States is something that just doesn't exist here. (maybe privately) 

    Social medicine has its advantages and disadvantages. On the whole, it's pretty good.

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  • Binney4
    Binney4 Member Posts: 8,609
    edited October 2012
    Dassi, google "lebed, healthy steps" and you should see several YouTube videos of the various parts of the Lebed routine (they're numbered). You can try them out that way and see what you think before investing in the DVD-plus-shipping. Hope that helps!Smile
    Binney
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  • dassi52
    dassi52 Member Posts: 206
    edited October 2012

    Thanks for the idea. I had already seen some of them but I admit she sometimes annoyed me with her encouragements (as if we are little kids).

    Today I had my first exercise group meeting with the LPT.Good. She did part of the exercises that you can see on youtube (massage by heather) and guided/corrected us and will continue next week. I think she might actually teach us MLD which I am really waiting for. My previous therapist showed e only 1 minute thing, and seeing it in real life rather than youtube is just better. Eouldn't want to mess up my lymph system by doing it wrong. 

    She mentioned a new study done in Spain where a group of at risk for LE women did exercises and as a result fewer developed LE as opposed to the control group that didn't exercise. I didn't check it online but I am sure she didn't make it up. In other words - doing exercises to get the lymph system moving helps prevent LE! So everyone out there at risk, you won't lose out by doing exercises BUT carefully and gently. Someone in the group who said she had been working out regularly but still got LE. Apparently she pushed herself too hard.

    Signing off because my hand is bothering me,

    Dassi52 

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

    Dassi,

    Carol is our resident exercise expert: the studies have been with carefully controlled exercise--hand weights and stretching--and did no harm, and potentially helped. For women with LE, they had to be rock solid stable. In the women at risk study, it was carefully controlled.

    And yet, many women get LE when they exercise, and often it's just the critical overload of the lymphatic system that was already compromised.

    The studies in the US are from U Penn, I hadn't seen a study from Spain, but there was a study in BMJ about early PT and I kind of think it was from Spain...

    Hands are tough.

    I agree with you about Lebed: she's weirdly condescending, and I can only take a little bit of it. I don't do it a lot, and yet when I do the lymphatic opening segment, I feel better.

    I had used the VHS video--it's too vigourous, IMO.

    Did you see the MLD youtube videos from Michigan State that nitocris put up?

    Jane, our intrepid webmaster, put them on the stepupspeakout site, they're on the bottom of the page:

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

    Hope the hand feels better soon.

    Kira

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  • dassi52
    dassi52 Member Posts: 206
    edited October 2012

    Thanks, Kira,for bringing to my attention that SUSO put that up. I had looked at it as well as a few other videos, but I still want to see how my PLT does it before I really try my own. Won't have to wait too long. My appt is this Tuesday (after waiting more than a month..) There are just not enough therapists to go around but she is the most senior one here, and that's good. 

    Here in Israel we're ahead of you and it's 10.30 pm. Going to call it a day because I have to get up early, not just for work but for taking care of my lovely hand and doing exercises. (My fingers were out of use, and now need straightening and lots of hard work to lengthen the tendons etc.0 What fun. What I really can't stand that LE has taken over my life. I'm sure that is true for all of us. On the other hand, there could be worse things....   I'll leave the griping for the gripe thread. Will download some Lebed tomorrow.

    Good night

    Dassi52

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

    I suspect the Spanish study is be Torres Lacomba. The exercises in that study are gentle post surgical stretches and shoulder work, done soon after surgery. The study report says that the women in the intervention group were given the exercises after a PT evaluation, which took place after hospital discharge. There is no mention of exactly when the exercise started, so we surmise that it was about a week post surgery, allowing a few days for discharge and then a few more for PT eval. The question of when Lacomba had patients start the exercise is important, because Todd et al found that patients who do not wait at least 7 days after node dissection to start PT exercise are about 3 times more likely to get LE within a year, compared to those who start right away. So, for post surgical shoulder exercise, Lacomba finds we reduce LE risk by doing it, and Todd finds we need to wait a week or the exercise itself ups the LE risk.



    And as Kira pointed out, weight training can bring benefits by making us stronger, so that we condition our arms/trunk to lift heavier loads without signaling 'help' to the lymphatic system. But to avoid having the weight training itself traumatize us, and cause LE to appear or flare, we need to lift weights cautiously, following a slowly progressive program. And if we already have LE, it must be stable before we start lifting.



    Clearly exercise can be a double edged sword for LE.

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  • dassi52
    dassi52 Member Posts: 206
    edited October 2012

    I finally had a session with the LPT this morning. She didn't really know me, so she remeasured everything and - good news - says the LE is in pretty good shape. It just needs to be maintained. She showed me a mild massage. She claims I don't need more - 3 places: neck, armpits and groin, and it's very little work/ time. 

    Re exercise, I looked at the Lebed youtube videos in the correct order, wrote myself notes what she does there and started this morning. (I am off from work today and tomorrow so there was less pressure to leave the house). I am embarrassed to admit it, but some of the ex. that looked so easy, weren't easy for me. I guess that tells you what shape I am in! In between I also did some of the exercises that Heather does on youtube. If I had the time and right tools, I would take those youtubes of Lebed, cut out the unnecessary part, maybe voice over instructions and splice them into a one video sequence . But that is just wishful thinking. Maybe there is someone out there who is bored, reasonable-looking and wants to do a retake in one shot? You'll be famous among the LE patients! 

    There is only one problem with all of it - self-discipline to do what we need to do beyond wrapping.

    LE is so time-consuming. (especially the forum!!!)

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  • dassi52
    dassi52 Member Posts: 206
    edited October 2012

    I had watched the 10 youtube videos by Lebed. In one, she claims very strongly you shouldn't lean your head back because it cuts off lymph flow. I just joined a 4-week group by my LPT, who- besides giving information to LE patients and those at risk - also shows us exercises to do. In the beginning it was quite similar to Lebed, but one of the movements she guided us in was moving your head back. I later mentioned what Lebed had said, and my PT said that it was a natural movement, f.e. when you look up, and that it's no problem. Who's right? I have no idea. She also showed an interesting exercise when you bring your shoulderblades together, because that makes the back muscles work and helps the flow. I guess I will pick the best from everyone, and make my own routine. Just because Lebed is the only one out there with her exercise videos, doesn't mean there isn't anything else that can be incorporated in a gentle routine.

    If anyone has professional knowledge about the neck movement, I would love to hear. Maybe  I should email  JoAnn. 

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  • hugz4u
    hugz4u Member Posts: 2,781
    edited October 2012

    Dassi, My chiro says absolutely no head back with my degenerated disc neck problems. He is not in favour of them anyway. I see him this afternoon and will ask why he doesn't like them. If I do go backwards with the neck I am I trouble, usually a major stiff neck. I know yoga calls for these head extensions but I just can't do them. I do think lebed does have a point about cutting off the lymph but I haven't read anything scientific on it. Hopefully Kira may see your post and know as she took a lymph course.

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  • dassi52
    dassi52 Member Posts: 206
    edited October 2012

    That's interesting, but I guess it specifically applies to you because of your neck problems. (Mine are in the lower back and I already learned what I absolutely shouldn't do unless I want real trouble). I guess, we'll wait for a pro to comment on this.

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