VISIBLE SIGNS OF LYMPHEDEMA - A PICTORIAL

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  • annadou
    annadou Member Posts: 221
    edited April 2010

    Lindalou -Thankyou VERY much for the info. The wrapped hand was pretty scary probably twice as much padding than I use so I will try it out.

    The great thing on your tutorial was seeing the improvement over the years-hope it continues for you and all of us

    Warm regards

    Anna

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  • Sher
    Sher Member Posts: 540
    edited April 2010

    Lindalou, thank you for posting these pictures!  Just a quick question......do you apply finger bandaging before or after the swell spots?

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  • LindaLou53
    LindaLou53 Member Posts: 929
    edited April 2010

    Hi Sher,

    I apply the finger bandaging before the swell spots.  There are many approaches to wrapping that work but one of the important principles is to protect the underlying skin from irritation whenever possible.  Always use a soft tubular stockinette around the arm and hand before applying bandages.  You can then apply the finger wraps.  I also like to use soft rolls of Artiflex to protect my wrist, hand and elbow areas and to start the buildup process before applying pads, foam or short stretch bandages.

     With advanced wrapping techniques individual foam pieces custom cut to fit the shape of fingers, thumbs, dorsum and palmar areas can be incorporated into the finger wraps to help secure them in place.   This type of bandaging is very difficult for the patient to do themselves without help and care must be taken that the compression is gradient and evenly distributed. The images I posted above of hand bandaging using multilayers of wraps, pads and foam is best done by a certified lymphedema therapist initially until the right combination of components that works for you is found. 

    It was this type of intensive wrapping of my hand that caused me to create a cotton glove with velcro for holding foam finger and hand pieces in place so that I could more easily do the wrapping myself at home.  You can check out the very bottom of the wrapping/bandaging page on the StepUp-SpeakOut website to see more details.

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

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  • Texgirl
    Texgirl Member Posts: 211
    edited April 2010

    FABULOUS !! Thank you so much ....great info...!

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  • roseg
    roseg Member Posts: 3,133
    edited April 2010

    That's an excellent reference!

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  • susieqstew
    susieqstew Member Posts: 2
    edited April 2010
    Very helpful information!  THANKS!Wink
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  • massagebyjulia
    massagebyjulia Member Posts: 25
    edited April 2010

    This is soooo interesting! Thank you for taking the time to do this for all of the members! Pictures sure do make explanations of LE clear for people.

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  • kira66715
    kira66715 Member Posts: 4,681
    edited April 2010

    Linda, your wrapping photos vividly describe the "Law of Laplace"--where you attempt to create a circle, because a flat surface wrapped with get the most pressure on the edges. The photo of the Norton wrap is perfect to explain it.

    I've written the moderators twice to pin this, don't want it to drift down--it's just too important.

    Kira 

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  • lvtwoqlt
    lvtwoqlt Member Posts: 6,162
    edited April 2010

    I have written the moderators about pinning this thread.

    Thank you Linda Lou. Have you considered putting this on step-up-speak out as well?

    Sheila

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  • Wonderland
    Wonderland Member Posts: 3,288
    edited April 2010

    Linda Lou,

    You write this with such clarity and understanding - you should be in health education! This is totally FABULOUS and thank-you so much for caring enough about us to pass on your knowledge and personal history about this devastating "side effect" of breast cancer surgery.

    Wonderland

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  • annadou
    annadou Member Posts: 221
    edited April 2010

    If its any help to anyone I made small tubes of foam for my fingers(think miniature toilet tissue rolls)

    but I like Lindalou's glove idea.

     Anna

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  • OneBadBoob
    OneBadBoob Member Posts: 1,386
    edited April 2010

    Thank you Linda, and thank you Moderators for "pinning" this thread!!!

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  • lexislove
    lexislove Member Posts: 2,645
    edited April 2010

    This is excellent. Thank you for taking the time to do this!

    Linda...quick question:

    Your left arm before and after pics are from 2006 - 2010. did it take 4 yrs to get your LE under control? what were you doing exactly? Massage, bandage, sleeve...and for how long?

    thanks

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  • LindaLou53
    LindaLou53 Member Posts: 929
    edited April 2010

    Lexi it is not a final destination but an ongoing journey! Smile   It took little over a year before I felt my arm and hand were under better control and continuing to improve.    I have done it all in terms of treatment.  The gold standard basics of CDT which involve daily MLD, wrapping or wearing garments, skin care and exercise I still have to do today and most likely will the rest of my life. 

    During my initial periods of intense swelling and fibrosis in addition to the intensive wrapping sessions I was also using Kinesio Tape, a Flexitouch pump, rebounder, taking Selenium etc.  I wrapped with short stretch bandages every night for over a year  and then bought my first JoviPak nighttime sleeve.   I only use custom flat knit garments due to my fibrosis, need for higher compression and my long arms that can't wear off the shelf garments.

    Because I am blessed with good insurance I get two pairs of sleeves and gloves every 6 months to make sure I have properly fitting garments.  I get professional MLD twice a month and still do my at home version of MLD daily.  I added the low level laser into the mix 2 years ago and continue to use that today.  Even though my LE progress has been gradual, I am very pleased with the fact that now even 4 years later it continues to improve.

    Will my hand and arm ever be "normal" and not need to be maintained with garments and daily MLD? I seriously doubt it.  But I am still ok with that as long as I know the time and committment I spend is keeping me infection free and improving my functionality. 

    Does it get tiring and frustrating at times?  Yes, of course it does.  I still can't golf or crochet like I used to...but with the ongoing improvements I am getting closer to the real possibility of resuming those activities again. 

    I know how difficult it is initially when facing a LE diagnosis to imagine your life adapting to the demands of daily maintenance.  It is still a struggle at times for me even now.  But honestly, I have found that dealing with my LE has become just another one of the daily rituals I have to do.  Whether it is pulling on panty hose or pulling on my compression sleeve, washing shirts or washing garments and bandages, exercising to lose weight or to improve my flexibility and lymph flow, it has all become just a part of my life now.

    So my LE journey continues as does my BC journey and life in general.  I tend to be a practical minded person so I gave up being angry a long time ago.  Life presents challenges no matter who we are.  We just deal with the challenges the best way we can and try to remember all the good things that we still have to be thankful for. 

    Sorry Lexi for such a LONG answer to your quick question!  But the reality is I continue to do all the basics for maintaining and continuing to improve my LE.  Not everyone will have to do what I do, some may do a lot more and others less depending on the severity of their LE.  

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  • apple
    apple Member Posts: 7,799
    edited April 2010

    how very helpful Linda.

    My son wore compression garments, hand measured and sewn for scar reduction and mobility/flexibility after severe burns.. They also had a glove that could in essence be inflated.. it was 'in the works' patent wise.   I wonder if something like that would work for those who suffer from Lymphedema?

    something like this maybe..

    http://www.patentstorm.us/patents/6757916.html

    http://www.freepatentsonline.com/6694523.html

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  • lexislove
    lexislove Member Posts: 2,645
    edited April 2010

    I appreciate your response Linda ...thank you. Smile

    I'm eager to be jumping on managing the LE swelling bandwagon, but I just noticed my sleeve (which I just purchased 3 months ago) slips down to my elbow. I, like you, get 2 sleeves/gloves per year. So, in June I will get fitted again....and July I will have my new sleeve.

    I have not worn my sleeve as I should. To be honest, it has taken some time to get use to. I also finished 2 weeks ago a 6 week course of anti biotics for an infection I developed after my implant swap. I was told NOT to continue with LE massage until the infection has cleared. So....? Here I am now. Wanting to get started on getting my LE under control. I will be starting back on massage soon.

    Is there a thread or website showing examples of exercises to do to manage LE? Hopefully some pictures!

    TY.

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  • BoobsinaBox
    BoobsinaBox Member Posts: 550
    edited April 2010

    Linda,

    I really appreciate your no nonsense, down to earth approach to life!  Thanks for all you do for so many of us by being you.

    Dawn 

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  • LindaLou53
    LindaLou53 Member Posts: 929
    edited April 2010

    Lexi since it will be awhile before you can get your new sleeve I think your plan to have your LE therapist show you and your husband how to wrap with the short stretch bandages is a good one.  Make sure you plan on several sessions for her to both do the MLD on you and teach you again how to do it at home.  Depending on your insurance, it would be ideal if you could have a 2 week intensive wrapping period where you see the therapist 3-5x per week for wrapping.  This helps accelerate the process of reducing any excess limb volume and puts you into your best shape for the garment fitting in June.  Either way, the best thing is for you to get familiar and comfortable again with the concepts of MLD and wrapping.

    Regarding exercise, the Healthy Steps Program (formerly known as LeBed) is a great exercise program for LE.  Many local Wellness Communities or cancer centers may offer free Healthy Steps exercise groups. If you don't want to attend the group sessions you can also buy the DVD and exercise on your own at home.  The exercise is fun, easy to do, and not too strenuous for your LE.  Here is a link to the website DVD/Book store:

    https://www.lebedmethod.com/store/?productID=17

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  • LindaLou53
    LindaLou53 Member Posts: 929
    edited April 2010

    Apple - I am not sure those gloves would work for LE but it is an interesting concept.  If they were able to provide a gradient pressure with the inflation chambers it might be more effective.  Although if you consider that adding dorsum or palmar pads just applies additional downward compression I suppose inflatable chambers would be a similar concept to pads. They might be a little more bulky for daytime wear though.

    For someone who is a fan of the original Star Trek series and a firm believer in future technology, I won't be surprised if one day they develop some type of "force field" around our body that can invisibly apply just the right amount of compression as needed!  Lol...if they can ever do that though, I would hope they could certainly figure out how to prevent LE altogether by then!  Wink

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  • LindaLou53
    LindaLou53 Member Posts: 929
    edited April 2010
    Thanks Dawn!  Appreciate the comments... Smile
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  • Emme
    Emme Member Posts: 205
    edited April 2010

    Thank you for the information.  I'm currently in physical therapy with a lymphedema specialist.  I am being fit for compression sleeve and glove.  Thanks again for the information, I was so afraid.

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  • shadow2356
    shadow2356 Member Posts: 393
    edited April 2010

    Thank-you!!! I have looked all over the net for pictures like these. I was never able to find them. I have swelling to both hands and pain in my right elbow. I don't know if it is a continuing side effect from chemo or something else. Can you get lymphedema if they only took 2 nodes out on each side?

    Thanks for taking the time to do this. I am sure you helped a lot of people.

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  • LindaLou53
    LindaLou53 Member Posts: 929
    edited April 2010

    Hi Shadow, glad the pictures were helpful.  To answer your question...yes you can get LE with just 2 nodes removed and some women on this board got LE with no nodes removed, just prophylactic mastectomy.  The statistical risk of LE is higher the more nodes removed and if you had surgery plus radiation to the axilla, but the risk of LE is still present anytime the lymphatic system has been disrupted.

    If you are experiencing swelling that cannot easily be attributed to your chemo or other conditions, you should consider getting an evaluation from a qualified LE therapist.  Better to rule out LE early and find the real cause of the swelling, or if it is LE the sooner you start treatments the better.

    How to Find a Qualified LE Therapist

    Let us know how it goes.

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  • BMD
    BMD Member Posts: 1,492
    edited May 2010
    Thank you for posting the pics. For the last few weeks I have been experiencing what I thought was tendon pain in my wrist and attributed it to Femara. That is until I noticed this week that my wrist was swelled up and my hand was becoming more numb in the night than usual. My dx was in 2006 so I really wasn't concerned that this would happen to me now. I wasn't sure which doctor to call so I made an appointment with my pcp and left a message for my onc. Then I came here to see your pics.
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  • lovetosail
    lovetosail Member Posts: 544
    edited May 2010

    These pictures were great, so informative.  Thanks

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited May 2010

    I'm a LE newbie.

    Thanks Linda for all the info!

    I'm so sorry so many girls have to deal with this. To all of you who are...I hope you get relief soon.

    I was dx'd 5 yrs ago. Had really bad cording after my Ax Node Dis, but it never turned into LE. The cording pain lasted for about a year. I finally had 3 pain blocker injections and it worked. Then...in March I lifted a 40lb container of cat litter into my suv and the cording appeared immediately. Within a couple of weeks, LE decided to join in. Since the beginning of April, I have been going through extensive LE therapy, compression wrapping, sleeve, glove, massage, ETC! Arghhhhhhhhhhhhhhh...the pain is better - but man oh man what a rollercoaster ride it's been! As of today the cording is almost gone (elbow up). But my elbow, forearm and hand is still bad. I'm having an MRI of the elbow this afternoon.

    I thought it might help to post cording photo - just fyi. (I blocked out my head - Embarassed.)

    At its' worst, I couldn't straighten my arm without experiencing intense pain. It was awful!

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  • BoobsinaBox
    BoobsinaBox Member Posts: 550
    edited May 2010

    Thanks, Laura.  You pic is very helpful as well.  I do hope everything settles down for you soon.

    Dawn 

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  • Kellke
    Kellke Member Posts: 424
    edited May 2010

    Excellent presentation.  Maybe a future career as a guest lecturer at any type of health care or medical school? 

    Thank you for posting,  Kelly

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  • Kellke
    Kellke Member Posts: 424
    edited May 2010

    Excellent presentation.  Maybe a future career as a guest lecturer at any type of health care or medical school? 

    Thank you for posting,  Kelly

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  • lvtwoqlt
    lvtwoqlt Member Posts: 6,162
    edited May 2010

    Laura, just glancing at the photo I was wondering 'what in the world is that', after reading the post I see where your head belongs Tongue out. about lifting heavy items at stores, I am not shameless, I will ask for assistance at the cash register in loading my car and if they won't help, I will ask any able looking man walking by the car to lift things for me. I just bat my eyes Kiss and in my helpless voice say ' excuse me sir, could you help me put this in my car? I've had surgery and am not supposed to lift this much weight.' Then thank them much for their assistance. If my son is with me, he won't let me lift anything.

    Sheila

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