GRRRRRRRRR I HATE LE..........
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Don't assume your sleeve and gauntlet will be the same size: in sleeves I'm a M short (LympheDivas), or M regular with extra-wide top band (Juzo); but in gloves and gauntlets I'm S all across the board. I find the Mediven Harmony glove to be the most effective, but the Juzo half-finger one lets me type and play guitar though it's much less comfortable. I can't even wear LympheDivas gloves, because the fingers on even the S size extend all the way up to the very tips of my fingernails (and past the end of my thumb & pinky). They have no plans to offer an XS or child-size, and advise against cutting down the fingers lest they ravel and run--and against folding the fingers over lest they over-compress my fingers.
On my first post-op flight (8hrs) back in Dec. I wore the Juzo sleeve and gauntlet. The Juzo S gauntlet barely covered my palm knuckles (but the M was too loose and gave a sort of trampoline-palm effect. I did get some finger-swelling in flight, so that's why my LE doc prescribed the Mediven Harmony for flight. (Could've been all the sodium they put in airline food--by an hour after landing, my hand was back to normal). I have since discovered the LympheDivas gauntlets in S are perfect--because I have small hands (smaller in proportion to my body than Donald Trump's), they come up all the way past my palm knuckles to my rings (which I remove in flight). On the shorter intra-Europe flights last Dec. I didn't need compression. But I didn't yet have LE yet, just mild cording. Now that I have Stage 1 LE, I wear compression for every flight regardless of length--I discovered this on a 2-1/2 hr flight from London-Geneva in late March, when my forearm felt tight. I also felt some tightness on the 20 minutes or so it took to cross the Alps on the train from Lausanne-Paris.
I currently have LympheDivas sets in Music City, Koi, Lotus Dragon (all tattoos) and Leo Leopard (fashionista), as well as a couple of Juzo plain sleeves and those two gloves. Sounds like a lot, but if I am on a long trip by car--especially at altitude or in hot weather, as well as playing guitar--I wouldn't be able to wash a set and have it dry before hitting the road again while wearing a second set. (Carrying damp items of clothing never turns out well). This way, I can alternate sets till I get to a destination that would let me wash & air dry them. The acid test is going to be my upcoming trip to NC in a couple of weeks. If I drive, I won't be hitting the mountains till several hours of the second day, and will be spending at least five days in first the Great Smokies and Blue Ridge till I get back NW of Lexington, KY again. If I fly, it would be into & out of Charlotte, cutting two days off my trip. That would allow me to change sleeves every day and not have to wash any of them till I get home.
The downside of wearing hand compression in public is having to take it off to wash my hands lest I get it wet. I have also found that at least for guitar playing, kinesio-taping works as well as hand compression.
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Hi - thank you for all the great information and support y'all provide. I have Truncal Lymphedema and some swelling in my arm. I did the PT, fought to get my range of motion back, do self-massage, take precautions, have the compression garments, but I cannot stand wearing the bra or Spanx-like camisoles that worked during our short winter. I am at my wits end for how I'm going to make it through this Summer! It is hot, humid, and I have soaking hot flashes throughout the day. Anyone have suggestions about a bra that works for you? Or camisoles or tshirts? THANK YOU! ✌️❤️ Linda
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Hi, BookLady,
There are lots of truncal compression ideas at the bottom of this page, many with reviews:
http://www.stepup-speakout.org/breast_chest_trunck...
I've used "cleavage coolers" in the past and find they work well. The ones I used I made myself from a soft fabric, stuffed with flax seed. They're heart-shaped, so they fits nicely in the area between the breasts (or prostheses). I keep them in the freezer and use as necessary. Here's what they look like:
http://www.ladygolf.com/CLEAVAGE-COOLERS---Single-...
Stay cool!
Binney0 -
Bonney,OMG - I may live through this summer, after all! Thanks for the research and the creative ideas. Linda
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cleavage cooler?? OMG,, I must investigate this! Never saw before.
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ChiSandy, I am wanting to order a LympheDiva sleeve, they are so pretty!
Ladies, I have been fitted for a sleeve and glove, (last year), but have only recently needed to start wearing it all day, before I would put it on as I felt signs of swelling coming on. My question to you all is, do I leave it on all day, I mean, do I need to take it off at intervals during the day, for my arm to take a break? It has been comfortable, infact, I forget I am wearing it. Thanks in advance for your replies.
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Meadow: I think it will depend on how much your LE has progressed. I leave my compression bra on 24/7 and only take it off for showers. I'm sure someone who knows more than I do will jump in soon.
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Meadow
I wore mine all day long when swelling, and like you it did feel comfy, I was not told to take it off during the day, of course, never wear it at night I was told.
Knock on wood, it's been six years since I had any swelling, and needed the sleeve, Yeah!!
I do wear the sleeve when flying.
Hope your swelling goes down and disappears soon.
dsgirl
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Thank you both for your responses. So there is a night time sleeve...I do not have one of those, may need to check into that. MinuTwo, what do you sleep in?
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Meadow - I use the Sydney Bra from WearEase. There is a link at the "step up-speak out" site that Binney posted above.
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Dune. Had a massage at the Springs years ago. The worst of my life. The woman was trained by her mother. Never went to massage school.
Every state has different requirements for a license. PA & MD are strict. Don't know what WV requires lately and if untrained people are grandfathered . My massage therapist in PA is Constantly going to trainings and understands lymph precautions
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Just thought I'd share this. My swelling is at the front edge of my armpit. Any garment i tried cut right across it . Found a Reebok racer back sport bra. It does't have cups and hugs my chest. The racer top comes way up by the arm pit and hugs the poof Yay! It was on cleRance at Dicks. Have to find mor
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Oh, excellent, Chloesmom!! Wonder if that could hold a swell spot for me. You have inspired me to go looking for that bra or a similar one. We are supposed to get a Dick's soon,,, not sure if it is open yet. Time for shopping trip.
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Thanks so much Chloesmom! That is exactly the same problem area for me too!
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any chance you can post the model number on the tag? Maybe we can find it online. Wondering since you found it on clearance if it is being discontinued,,, or maybe just discontinued at Dick's?
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Chloesmom, that's good news that you found a sports bra that's both comfortable and workable! I looked online at some pictures that might be like the ones you bought and thought they looked wonderful, until I remembered that without good compression my back can swell as well, especially directly behind the axilla where sports bras never cover adequately.
Sigh!
Binney0 -
Hiya - a Big THANK YOU 💕💕 to minustwo (and dsgirl for telling me about minus two) for saving my sanity and helping my Lymphodema by telling me about a compression bra for breast/truncal Lymphodema. Like minustwo, I am in the sweat-belt of Texas, and I couldn't wear the compression camisole and torture bra prescribed for me. I was going to kill someone. The Sydney Bra, from the compression shapewear of www.wearease.com came in the mail yesterday. I cried when I tried it on and it fits and feels and looks good. I tried it out while gardening this morning and didn't rip it off in a screaming fit in front of the neighbors. A success! Love this forum ✌🏼️❤️Linda
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BookLady1
So happy to hear MinusTwo could help you find a bra that works. Yeah for MinusTwo. she is always so helpful with info on these boards.
Dsgirl
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Ah gee...thanks. There are so many people on these boards who have helped me I'm just trying to pay it forward.
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MinusTwo, I'm also in Houston, and I'm having difficulty finding an in-network therapist. Where do you have your therapy done, if you don't mind my asking
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1step - I'll send you a PM.
Edited to ad, if you haven't accessed the wonderful LE sight that many of our BCO members worked on compiling, that's another good reference.
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thank you booklady1. I am almost 5 months post BMX w/SNB both sides and no recon and was doing ok with genie bras but no longer. I have lost 20 pounds and incisions are healing well but I am seem to have more issues underarms near armpits and still chest tightness and nothing feels good. I will check that bra out. did it run true to size?
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Hi, everyone.
I just wanted to check in and see what all was going on. My LE got really bad, another round of cellulitis. I am afraid I may have it again, in fact. I stopped all MLD and wrapping with that, and using the pump I have that does MLD. I guess it's not manual if a machine is doing it, though. Ha! I saw my MO and he told me my hand was always going to look like it did unless I got a lymph node transplant and to make sure I reminded him after chemo was over. I was like, seriously, another operation? Then my hand started going down - like from not having knuckles to almost getting a size 4.5 ring on my ring finger again. I've lost 10 pounds from chemo and am not in PT and am still not doing any MLD right now or any wrapping.Today the weather is bad and yesterday I ate more than normal (Indian food and actually food period right now I'm so nauseous) and my hand/arm feels like it's swelling again.
This is the most ridiculous thing I've ever dealt with. I feel like I'm latching on to everything trying to figure out what is aggravating this or making it better.
I'm not in PT right now, I'll be back in about 2 weeks. (Insurance *shakes fist*) I'm at MD Anderson in Houston, so I'm assuming my therapists are qualified.
Wearing just a compression sleeve - when we were going that route just seemed to aggravate it after a while, so we went back to full out wrapping. That aggravated me, but I stuck with it. Now I really wonder if any of it makes a difference. The PTs had said that I may just have to try to keep it under control until chemo was finished.
ARGHHHHHHHH
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Frill, how frustrating! I'm so sorry--seems like the chemo ought to be quite enough without the LE to worry about. And especially not the cellulitis! Hope you can whip the insurance into shape before long--keep after 'em!
You mention wearing a sleeve--did you also use a compression glove with it? Without hand protection, a sleeve can definitely make hand swelling worse.
Elevate that arm as much as possible, drink PLENTY of water--and please keep us posted.
Gentle hugs,
Binney0 -
Frill, I just saw my surgeon yesterday, trying to get covered therapy started, and she said she often sees LE worsen during chemo and rads, but not necessarily a permanent worsening. BTW, I just down the road a bit at Methodist Sugar Land.
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Frill, watch salt intake,so bad for swelling.also reminder for all flying this summer,ask for low sodium diet.see if you can pack your own food on short trips such as high density foods like avocado without seed, walnuts, Brazil, cashew, almonds! The fat and protein in them will keep you fuller so you don't have to pack so much,sometimes though we can't avoid salt. Thinking of you.somewhere on these threads I posted chi tai breathing, it may help swelling, easy, only a couple minutes a day, I'll see if I can find it and bumps it u
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I would appreciate some thoughts from those you who have been around awhile about my dilemma.
Active treatment ended for me almost 2 years ago. In 2011 I had 2 sentinel nodes removed on each side during BMX. Originally had slight LE on the left trunk that mostly resolved. In 2013 I had ALND after a recurrence on the right side. After surgery & rads, II have mild truncal & breast LE. After PT I've been able to manage it with MLD and sleeves & gauntlets for flying or repetitive activity. I kept my port for blood draws and for the CT/contrast scans that Mo has wanted every 6 months. I fought hard and found places to give me flu shots in my butt instead of my arms at significant extra cost. Now my port has stopped working. Port will not be replaced since I'm no longer having infusions
I cancelled a scheduled PET/CT this week that I REALLY wanted to have done, but I didn't want to have that nuclear fluid put directly into my veins. The BS wasn't excited about ordering interventional radiology since the port will not be replaced anyway. So I gave up something that would have given me great piece of mind in this game that none of us can second guess. Now I'm faced with the blood tests for my 6 month exam. The clinic will only do blood draws from arms. My PCP will only do blood draws from the arms. The MO will only do blood draws from the arms. I'm guilty of occasionally letting them do blood pressure cuffs on my non-affected side (less affected side?), but now what? I feel like the only answer is to stop going to see any doctors forever, but I understand that is just an angry emotional reaction.
Thanks in advance for your thoughts.
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I hear you MinusTwo!
I got an order from my doctor to go to the hospital lab to draw blood from my foot. I don't always do that because they cause me so much grief to do it. SO... next best thing is my hand only or do it without a tourniquet. I do have an awesome lab tech that can do that..
Also, Being it is my upper arms that swell, I have done the wrist bp cuff and I bought my own and bring it with me for bps. It hasn't seemed to give me any swell problems.
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Minus: It seems ridiculous that you would even have to make this choice. Your port should just be replaced. Your chances of problems because of blood draws is increased. I don't understand why the MO isn't supporting this. Maybe I'm overreacting. I'm already a nut about this and I have one "good" arm. But my veins are tiny and I'm already a hard stick. Once I got the port, I haven't let anyone poke me. Your situation hasn't occurred to me.
I'm curious to hear what others say about this as well. My port is a pita, it has to be unclogged constantly, so I wonder what it's lifespan is. You shouldn't have to risk your health to figure out your health status!!!!!!
Binney: Oh, yes, I was wearing a glove with the sleeve, and when wrapping, the hand was always wrapped. The glove was a huge problem because my hand seemed to want to swell out of it - like the Incredible Hulk. I just hate looking at it and seeing my "paw" compared to my other tiny fingers. Up until this last chemo - last Thursday - I've been nuts about keeping the water up, I drink a gallon a day. Chemo nausea makes it very hard to drink water. Sometimes Topo Chico is the best I can do. The nausea is subsiding a little though, so I imagine I'll get my water in. I was elevating and doing all the right things before this last cellulitis. If there was *anything* I was supposed to do, I did it. I literally had a chart tracking my LE exercises and at home MLD sessions. That's why the continued swelling was sooooooooooo frustrating for me AND for the physical therapists.
Hugz4u: Salt intake - check. I even stopped drinking (OMG!) and that didn't do anything. My sister is the food marshall and my blood work is like a report card around here. MO can't believe how great my numbers have stayed throughout this. She uses almost no salt and I rarely eat out. My sister and I are really prone to retaining water, so we're fiends about watching for this kind of thing. I'm curious about the breathing. There is a breathing that is incorporated into my home MLD routine. I wonder if what you're talking about is different.
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Minus: here's what my LE therapist told me today. I asked her about my concerns about having carpal tunnel surgery done on my non-affected side,,, which is fine,, but I'm afraid that they will want to put an IV in the affected side, since they usually don't want to put an IV in the arm they are operating on. It's a really short surgery. So I asked her how bad would it be if I had an IV for a short time. She said,, it wasn't the length of time,, it was the break in the skin, where infection could get in. She suggested perhaps a short course of antibiotics to be on the safe side? Extra MLD and excellent skin care afterwards.
So in your case with blood draws,, PERHAPS using the less affected side,, lots of alcohol before the stick,, lots of alcohol after the stick. (wipe on skin AND drink it )The absolute BEST TECH to do the blood draw. Excellent skin care where the puncture is,, bandage and antibiotic ointment. 48 hours of antibiotics? Extra MLD. Just a thought.
Would the place that does the PET scan do a foot vein?
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