GRRRRRRRRR I HATE LE..........
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Faith, I took the survey on Friday afternoon and did the same thing, requested updated information regarding LE and prevention. Great minds think alike. Although I was unable to get back on bc.org until Monday afternoon due to pop up to take the survey wouldn't go away.
Sheila
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Thanks Sher. My gripe...they are putting me in a size 3 Juzo.
I did do a string measurment last night and used a ruler. My elbow area is 12", wrsit is 7" and the upper area is now 18". Needless to say I think there is a reason I am in pain by night time.
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3Jays, good morning! What a bummer with the dog ears!
If a compression vest is contraindicated I'd guess any sort of wrapping would be too. But if you can wear camis and shapers there might be better ones available. Here's a page with some other ideas to consider:http://www.stepup-speakout.org/Compression_camisoles_lymphedema.htm
I use the WearEase Slimmer and like the coverage under my arm, but there are others there that might be possibilities as well. MLD helps as well, but it's hard to remember to be gentle enough when it's making me upset, so I have to slow down and think it though every time. Let us know how you're doing!
CrazyKitties, hi! So, DO you have crazy kitties? We have two, both of them very crazy and a lot of fun. Yes, there is a node transplant surgery being done in the U.S. by a couple of surgeons. The long-term safety isn't clear yet, since removing nodes from the groin can create a risk for leg lymphedema, which is no fun either. And since Dr. Marga Massey only recently began a study of her own lymph-node transfer patients, an understanding of long-term results is still a loooong way off. There are some women here who have recently had it done, and I hope they'll post again as we haven't heard from them in a while.
Faith, happy travels!
Be well,
Binney0 -
I took the survey, too, and I really let them have it about updating the info on LE. I also really asked that they listen to and address the requests that come from this board.
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Oh, nice work on the survey, Faith and Tina!
I did too, and hoped I wouldn't be the only one to mention it.
Altogther now....!
Thanks!
Binney0 -
Same here - I asked for updated information on LE and understanding the risks
updated for grammer errors
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I thought it was the tamoxifen survey again, and I said "No thanks"--it hasn't asked me since.
Darn
Kira
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Hello, Ladies ~
Just popping in to say that I, too, took the survery and wrote about updating the LE pages on the site. I also mentioned our dislike of Nurse Shockney's "expertise".Artemis
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I did the same with the survey, and I had an awful time getting back on until Monday. At least they will be getting some good feedback to help them understand that we are serious about having good info on LE here. Thanks to everyone else who took time to do the survey and advocate good LE info.
Dawn
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me, too, i guess the swell siters let them know we're hear.. thanks, BINNEY, for your response. i do wear a shaper, it does help. i know your'e not supposed towear ace bandages, but it was all i had last night, i wrapped a wide one REAL loose over the area; IT WORKED!! i'll do it CAREFULLY till i see the therapist.. or, check a vet supply. they should have wide short stretch for horses legs, i would think.. where would i find the Wear Ease Slimmer? i'm gonna google it now..KITTY DOG.. i'm a fan of Gottfreid. i got a custom sleeve get up for real bad swelling. sleeves are't suppossed to take the sweeling away; but it really helps. i know Binney, and Kira; have links for the night gear; which? i believe does help reduce the swelling.. ck w/ them... good luck, ladies, hang in there! breath, and move (gently) 3jays0
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The WearEase is here:
http://www.shop.wearease.com/SlimmerActually, 3Jays, some therapists do use a very wide (20 cm) ACE-type long-stretch bandage for truncal LE. It's different from arms, where an ACE should never be used. Never worked well for me because the swelling I have extends higher than my axilla, so it didn't cover it. Here's another thought, though, for that underarm area, a breast binder:
http://www.breastbinders.com/
If you order one be sure to get the lined one, as it's more comfortable.I AM SO TICKLED at how many of us mentioned the need to improve the LE information pages -- just makes me smile!
Hugs,
Binney0 -
wanted to share with you one slimmer i found, unlike any i've seen before. you know im an HSN girl: it has an adjustable band in the back of the wiast; so when im swollen, i let it out a notch, to lessen compression. on special occasions, i adjust it in, and have a way skiinier waist... i love it. i can wear it, cause of the adjustability. warning, tho.. its' cut big, and i had to order down 3 sizes before i got it samll enough! thats' a welcome change!! its' a little more exp. but made very much like the one oou pointed me too. I feel more comfortable about the ace now, thanks. it really got my armoits, and that are back to where it should be... none of us would know even to speak up!! if it wasn't for you, and Kira. you've really helped, and are, helping me. you guys Rock!! Ohh! on HSN its' the " Diva Defined Shapewear collection.. 3jays0
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Hey Swell Sisters!
I have been a little missing in action .... EEEKKK!
HAPPY BELATED TO our Birthday girls! I just LOVE getting older now...... WAHOOOOOOOOO ! I loved the cakes... YUM!
Right now my LE is looking ok. No swell for me. I have figured out that when I fly a lot ( like 3-4 round trips in two month) my LE is triggered.
........ I wear compression. I wish there was something to wear that really worked for flying. I always wear it 30-45 min. before and after....Have a great day girls........
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I wonder if wrapping might work better for you when you fly?
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KittyDog, do you have a therapist measure your arm? Can you ask for a copy of the measurements so you can compare them to various manufacturers size charts? I checked Juzo size chart and a size III Max is 6.75-7.25" wrist, 10.25-12.5" elbow and 12-14.75" axilla. A regular size III is even smalller at the elbow and axilla.
It does seem that you are in the same boat with me in that your upper arm measurements seem larger than would be indicated on size charts for a standard ready made armsleeve. Possibly Jobst or Lymphediva, but not Juzo. Jobst and Lymphediva use mid-lower and mid-upper arm measurements.
I'm certainly no expert, but from what I've read here, it does seem if you are constantly wearing a too tight sleeve, it might make your swelling worse.
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Sher thank you for confirming what I was thinking.
I see my therapist again on Feb. 2 to be measured again and see how I have been doing on my own. She does not do the measuring and ordering for my sleeve. They have a guy come in from a local company. I can say I do not like him. I have not gotten my new sleeve yet. I was under the impression he was going to order a custom sleeve. However my LE PT said that the price he quoted me was not what a custom one costs normally. I am angry and just don't know what to do. At this point I think I will pay him and say goodbye to his business. There are two other places in our area and I already know one of them has the same theory that it needs to be tight. I am frustrated and disgusted at this point. I feel like ordering the size VI on my own because the longer I wait the worst my arm seems to feel.
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Kitty, I had the exact same problem with a fitter from a local company. It didn't matter to her that I (or even my therapist) told her I needed it looser in the upper arm -- that was NOT the way it was "supposed to" be made. I kept on nagging her and she got mad and told me she could be sued if she didn't make it right and "something happened." (That's total nonsense -- nobody's ever won a LE suit of any kind). But she was so mad she finally said, "Fine then! I'll make it YOUR way, but you can't bring it back for adjustments!" I agreed -- best sleeve they'd ever made for me. But she refused to make it that way again, so I switched brands. Gottfried does whatever we ask them to do -- seems reasonable to me!
What is with these people!Hang in there, Kitty! We're all different, but there's a "great fit" for all of us -- just don't know why it has to be such a pilgrimage to find it!
Be well,
Binney0 -
i, too, like the Gottfreid sleeves, and gloves i got. sounds like your ins. will pay; so INSIST on a custom made.. then, they can adjust it as needed, and as Binney,said, they changed t, and refined it till they got it right.. and hands are tough.. i think it was sent back 4 times, but they got it right.. let us know0
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There is not a place here that sells Gottfreid. I could say ugly words all the time. We live in the capitol of our state and we have nothing here. Washed my night sleeve last night. OMG should have done it sooner because it is so tight now. Mental note must wash it early in day. It wasn't quite dry so I ended up taking it off after three hours but I had nice marks all over my arm.
Swelling is not bed right now. So how I am doing my MLD must be working.I am just having major shoulder pain and I am now wondering if I have torn my rotator cuff more or if it is just inflamed. I did the no no last night and took a hot bath. Made my shoulder feel so much better. I was so ready to call the Dr. and see if he could give me another cortisone shot last night. I am wondering if the Femara is causing the pain because now my ankle hurts and it is swollen. So much to learn to deal with in our new life. I will gladly accept it to spend time with my girl just wish I didn't hurt so much. grrrrrrrrrrrrr
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((((((((((((((((KittyDog))))))))))))))))))))
Hugs for you dear one. Sending prayers of support -- for answers, patience, understanding and more patience...... for our whole swell sorority.
Today I took an 8 hour quilting class and I am just in agony. All of the standing around, bending down and rotary cutting out pieces & parts & then all of the heavy ironing of the various fusible products: GRRRRRRRRRRRRR.
Feels like towels rolled up under my arms tonight, rather than the usual washrags.
I know this is stupid for me to add this, but, here goes. I am the youngest woman in this class by at least a decade or two and I'm the one that had to call it "UNCLE" before anyone else. We were no where near being done with the "two hour" project, after our 8 hours and I knew that I literally couldn't do one more iota.
I know they look at me & think I'm 'young' and it makes me wanna growl.
I'm in pain now, sitting in the recliner & typing.
Pass the brownies -- it's the weekend!!!!
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(((((((HUGS FAITHANDFIFTY)))))))
I can't even imagine how you handled 8 hours. I am stressing over heming my daughters karate outfit. lol I have put it off all week but she has to have it Monday and it also has to be washed. I will get there it is just going to take time.
Hope you enjoyed your brownies! Passing them around to everybody else now. Enjoy!
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Shoot.... pass the darn brownies.... SORRY Faith..... lady... we all understand! We have all this youth inside us..... yet......LE holds that back many times. The decade older, I totally understand. Bless us!
Brownies for ALL !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
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((((Faith)))) Sorry you are hurting...
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They do do lymph node replacement. I met a lady the other day that had it done.
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i won't ever mess with my nodes again, myself.. this is bad enuff! Faith, even when your "home" your busy.. 8 hours! are you kidding..slow down and take care of your arms..0
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hey hi 3jays how you doin'??
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So my LE seems to be getting worse in my trunk/back area. I now have swelling in my back, right under my shoulder blade. I can't wear a bra for more than a couple of hours. My pain is constant.
I don't know what is causing it! I drink plenty of fluids, eat right, do my MLD, wear compression, am fit, modify as necessary during exercise. I push it some during Jam, but not a ton. The one thing I haven't been able to figure out how to fix is carrying stuff with my left arm. I mean how to you use your right hand when you have to unlock something???
I am wondering if the 5 little incisions in my abdomen from my hysterectomy are contributing. I'm waiting on a call back to schedule with me LE therapist. There is a freaking waiting list. Even though I am a patient, they have to close and reopen my case every single time due to insurance. It is such a pain in the butt! It's a recurring condition for crissakes! GGGGGGRRRRRRRRR
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My LE acted up after having my hysterectomy. Spent two weeks back at the clinic for daily massages and yuck being wrapped again. It worked. I also find I have to watch my sodium big time. Always have before the BC DX. I also think the Femara is causing some of my swelling. Good Luck
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*ignores the caffiene comment* Seriously, my screen name on most everything else is coffeediva. I LOVE me some caffiene! I would have to have a morphine drip for the withdrawal headache!!! No Fair! No Fair! No Fair!!!
I'm not overweight anymore...thank goodness. Thanks KittyDog...glad I'm not just grasping at straws. I see the LE therapist on Monday.
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Holy Moly!!! Today I wanted to feel pretty and have cleavage so I wore a regular wire free bra AND I AM IN PAIN!!!! 5 o'clock cannot come fast enough! The minute I am off the clock this bra is coming off! I think I can make the thirty minute commute home without compression (fingers crossed). I am so tired of having to plan my outfits around my D@%#! compression vests/sleeves...
Waaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaahhhhhhh!
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