Musings of a Marfan Mom

Lymphedema Treatment



lymphedema compression brace

Because my left leg is worse, it's been in this compression brace for most of the past week.

Unwrapping it for a brief break

Mummy toes!


The brace clearly shrunk my foot, though it's just temporary.

This is what part of my physical therapy for lymphedema looks like. I wear this for a few days, then get it off for about an hour. When my compression stockings come in I can wear those instead, and only use this get-up for when I fly.

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  1. I, because of the dysautonomia, literally cannot keep my blood pressure high enough to walk around without having thigh or waist high compression stockings. I wear them during all of my waking hours and have for several years. I am saying this to say I think they can work wonders! I know they will probably be very effective for your lymphedema. There are , of course, some draw backs to having to wear them but overall I am so grateful for such an effective treatment that is all natural. Best of luck!


    marfmom Reply:

    I’d never heard of that as a treatment for dysautonomia! I’m going to have to pass that along to my friends with Ehlers-Danlos syndrome. Thanks! I’m glad they are working so well for you. :-) I think they will work for my lymphedema; I just wish I didn’t have to wear them all the time, you know?


    MuseOddity Reply:

    If Postural Orthostatic Tachycardia Syndrome is the primary manifestation of dysautonomia, as is the case with many EDS patients, compression hosiery should be an integral part of your first line of attack. I agree I too wish I didn’t have to wear them all the time, especially in warm weather (admittedly less of a problem for me here in Ohio ). I hate not being able to wear cute sandals and shorts but it is so much better than the alternative for me so I guess it is what it is. I seriously hope knee highs do the trick and you don’t have to try the body suit!


  2. Just wondering, are you getting knee high or the lovely thigh high model? I’ve worn both. They really are helpful. Good luck.


    marfmom Reply:

    For now, the knee high. The PT said though that if that and the massage don’t do the trick and fluid starts building up around my middle that I’ll need to wear a body suit too :-(


  3. How do you get it to stay on?! I’m supposed to do the same therapy but haven’t been able to keep the wraps on long enough to shrink down to a measurable size for garments. Any pointers?


    marfmom Reply:

    Well, and it’s hard to see in the picture I think, but the base of the whole thing is a kind of open-toed sock. That goes on, and then there are layers of other bandages, all very tight. When the sock goes on, there’s a good 6 or 8 inches left hanging past my toes and at the end, that gets pulled back over all of the bandages, and the extra fabric over my knee goes overtop of that. It also has to get re-done every 2-3 days because my leg shrinks too much to keep it taunt otherwise. But with how the sock wraps under and over everything, it keeps the brace pretty stable otherwise. Does that make sense? Is that how yours was done? Now that my legs have shrunk down, I can use a regular compression stocking (a sturdy one though, not the cheap stuff from Target or Walmart), but I’ll have to wear it forever. I’ve been able to get the compression stocking for my right foot and there’s a special gel liner along the inside top of those to keep them up on my leg.


    kp Reply:

    That is how mine was done. I was hopping there was more to it, but perhaps the beginning size of the leg makes a difference (my calf is at least as big as the average woman’s thigh). Glad yours is working!


    Vickie Reply:

    compression bandages will stay in place better if you use a layer of foam like the gray foam sold by the foam goes over the stockinette, then wrap over it with the short-stretch bandages. works wonders!

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