Now leg lymphedema

cmhartley

About 4-6 weeks ago I suddenly developed edema in lower left leg.  I've been battling chronic lymphedema in L arm for several years. Just curious if anyone has developed lymphedema elsewhere?   

Thank you so much,

Katie

exbrnxgrl

I have mild LE in my left arm. For the past 6 months I have had occasional swelling in my left ankle and calf. It has worsened in frequency, but not severity since early April. I don't know if it's related.

Caryn

Binney4

cm, I've had arm and truncal LE for about a decade, but in the last two years have developed LE in one lower leg. There is some recent research showing that a decreased lymph transport capacity in one part of the body affects the lymph system as a whole, so perhaps that's not entirely strange. BUT, sudden swelling can also indicate other issues, some of which can be emergencies (like a blood clot, for instance), so please do check in with your doctor to find out what's going on.

And do please keep us posted about what you discover. Gentle hugs,
Binney

carol57

I don't think I have leg LE, but I sure do notice that injuries like an ankle sprain or even just a scratch or a bite trigger a lot more swelling on my left leg --my arm/truncal LE are on the left side--than ever before, and it seems to last forever, too.  

KittyDog

It's more like where do I not have it now.  Right arm, neck, trunk, leg and left leg.  What bothers me the most the belly.  Looks like I am expecting but just on one side when it is bad.  

toomuch

I've had left arm LE since my lumpectomy/AND. Two weeks ago when I was at the LE therapist, she noted left leg LE. It's mild and I think that I've had it since my BMX and S-Gap reconstruction. I noticed the leg swelling 2 weeks after that surgery and I was worked up for a DVT. I haven't thought about it much since but it is still there! Thinking about doing MLD on my LE is too overwhelming so I stick with central clearance and MLD on my UE. I think that my flexitouch must help with the LE too.

Binney4

toomuch, I got a Solaris night garment for my leg LE. I don't use it every night, but I do when it's flaring or achy--put it on in the evening then too, and it's comfortable for computer or TV or reading but doesn't work too well for walking. I do wear a knee-high compression stocking on my LE leg every day--BrightLife Direct has a microfiber stocking that's really comfortable, even in hot weather. (The disadvantage is, if I wear regular socks over it they tend to slip down into my shoes. Small price to pay for the comfort and effectiveness, though.) At night when I'm not using the Solaris I wear a BrightLife Allegro all-cotton compression stocking. Also cool, since it's a natural fiber. BrightLife Direct has stocking sales in January and July--four for the price of three--so I'll reorder in a couple of weeks. My garment supplier doesn't carry these brands, but they're so relatively inexpensive that I can just save up and buy them.

I also have a Circaid Juxtafit knee-high garment--it's a soft, non-elastic fabric with a series of Velcro closures. It really works well for bringing down swelling in my leg (the arm ones aren't nearly as effective for me), and they're comfortable.

Like you, I can't do MLD every day for both arms and one leg, but I find the first two sections of Lebed (opening section and leg exercises) really effective for keeping the whole shebang in control. Takes less than half an hour a day. I turn the volume way low to avoid the chatter.

I hope others with leg LE will come along and post their own solutions so we can all compare notes.

Be well!
Binney

toomuch

Binney - thanks for all the tips regarding Brightlifes products. I'll watch my emails for their July sale. I'm on my feet all day at work so I really should wear compression. The cotton stocking sounds interesting for sleep. I think denial will keep me from looking at the Circaid. I misplaced my lebad DVD and should replace it. All in my July order!  Stay well!

warmsmartcookie

After my failed TUG flaps I developed LE on both legs about a month later. It was very, very bad on my left leg especially in my ankles and knees. Because I had large wounds on the inner thighs the scar tissue caused the LE. I wore sigvaris opaque tights mild compression petite length. I liked these because they were soft enough to not pinch my legs, and they looked like regular hose (even though they were more like tights). If I wore heavier compression or the ultrasheer type of hose it would pinch my plump little legs and cut off the circulation in the process.

I used a leg compression pump for a year, morning and night. I spent a fortune on lymphatic massage, but it really made me feel better.

Then my left side of my abdomen became huge. I learned how to do my own lymph drainage. Ultimately, it was the PS who removed the scar tissue in my left breast and in my legs that returned my LE to almost normal, 3 years after the onset. 

Now I don't wear the hose, and I just have a little bit of swelling on my left ankle, about an inch more than the right foot. My feet are now a WW instead of a W. When I travel I have to wear hose, and my legs are in agony from the twitching the entire flight.

I started using the Graston Technique through my chiropractor and it has really helped my circulation through the scar tissue. Now I'm able to do weight lifting on my legs and it has really helped me feel better.

I have to say that LE in the legs is the worst outcome of my failed flap surgery. My legs felt like they had bee stings all over my knees, and my legs became very weak. If it weren't for the treatment of my scar adhesions and weight lifting, it wouldn't have improved. 

Binney4

WOW, wscookie! Good for you for taking charge! I'm really sorry for all you've had to go through--frustration on top of disappointment on top of outright pain (not to mention the expense!), but I really appreciate your sharing your experience with us. You might want to join our Kicking LE's Butt thread, too--lots of us there working on getting stronger and taking control.

Be well!
Binney

AnnE16

This is the topic I was specifically looking for!  I was going to start a discussion! I am having lower left leg edema.  I have been on Femara and Zoladex for the last 5 1/2 years.  If you look at the package inserts for BOTH drugs, BOTH drugs mention "lower leg edema."  IT is a rare SE but it is noted! So I noticed swelling (mild) a month and a half ago.  But it also had a "fuzzy" type of feeling.  Sometimes that leg or lower calf almost feels like the muscle is weaker than the right side. I called the oncologist. He ordered ultrasound to rule out blood clot which was negative.  I saw him last week and asked him to order work on my leg since I already have my right arm with lympadema!!  He wouldn't do it.  He said he doesn't see anything (even thought he commented at the prior visit that the left leg felt different).  UGUUGH!  I will get an order from another doctor.  BUT....I pointed out to him that Femara and Zoladex have this in their package insert. He was adamant this had nothing to do with Femara. 

I am curious...How many of you are on Femara and/or Zoladex?  I also have to say that I do need to lose some weight and my family has a history of poor circulation (my moms side) hence the arm lympadema I am sure!!! But I do think the drugs have something to do with this.  What do you guys think?