GRRRRRRRRR I HATE LE..........
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Oh KS1--you need a lot of brownies. Did they measure the opposite arm for comparison--I make my LE therapist do that, because, thanks to numberous reasons, my weight has gone up.
It sounds like you're compression sensitive--Binney is too--and that maybe that daytime Jovi thing is the best for you.
I personally don't think your arm will just continue to get bigger each year--it's just that you're facing a host of challenges: brachial neuropathy, cervical radiculopathy along with LE.
I do see my LE therapist a lot--I get an MLD session from her twice a month, although recently she's said we could back off a bit, and we measure monthly. A couple of weeks ago the measurements were up in the upper arm--a cord and who knows what--so we measured again in 2 weeks to reassure me.
enough about me, this is about you: you have every reason to be discouraged and upset, and I'm really hoping that things stabilize and improve.
Having no power for a week doesn't help, either.
Kira
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Betsy: RASHES??? please expand. Are you sure its not cellulitis?
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BetsyBuzzz - I have older sleeves that I kept and wrote 'no BP or IV' on for when I had my thyroid cancer removed...I was able to wear them during surgery and never had a problem with the nurses because of them. I had my iv put in the top of my foot and my BP cuff was on the other leg when I woke up from surgery.
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TerriD - It started as a rough spot on my skin under my brace. Now it is red and dry, nothing open. I get the same type of rash on my chest. I've had drs look at it and they just say it's a rash. On my chest it grows to about 2x2 inches in size. My arm, it's about a quarter inch in diameter. I'll have my onc look at it before surgery just in case.
o2bhealthy- I didn't think they would allow you to go to surgery with a sleeve on. Another thing to ask my onc prior to surgery. If so, I will just get another sleeve (I'm due for another one anyway). I doubt they will allow me to wear a sports bra into surgery for my chest. But wth...I might as well ask about that too.
Thanks...I knew you guys would point me in the right direction.
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I had a breast binder that my DH helped me put on immediately after surgery...we removed my port at the same time...I wasn't sure about the sleeves either but no one gave me a hard time amd when I woke up they were still there
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Betsy, when I've had my 2 D&C's--thank you tamoxifen--I've worn a gauze finger wrap and the pink g-sleeve that says "No IV, no blood draw" and no one gave me any grief about wearing these non-sterile items into the OR.
Women who've had reconstruction by Dr. Massey describe how she wraps them before they go into the OR.
Sorry about the endometrial CA--hope you recover quickly. I assume they're doing some lymph node sampling, so when you get back in touch with your LE therapist, perhaps she could do some MLD on your legs.
The last D&C, the anesthesia guy thought he was brilliant: he withheld all fluids for me, because I have "edema:"--essentially dehydrating me and making the side effects of the IV sedation worse, and he was so proud of himself. I had nothing by mouth and less than 100cc of fluids during my time in the OR/recovery.....We NEED fluids....
Kira
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Betsy, I just posted randomly about this a few days ago. I had surgery Monday (orthopedic) and they didn't bat an eye about my leaving the sleeve on.
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I will call my LE therapist pre-surgery. Mostly because I know they plan on removing lymphnodes in my abdomen during my surgery. I'm hoping this won't cause problems since I drain my arm to my right leg. I drain my chest to the left armpit. The onc said I may start to have edema in my legs from the surgery. I can't even go there in my mind right now. Hopefully my therapist can re-work my drainage process, if and when, needed. A call to my therapist now might be really good.
o2bhealthy- where did you get the chest binder? That may work for me too.
Kira- nice to know about the fluids. One more thing to put on my check list to discuss with my drs.
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Betsy I got my binder here http://www.breastbinders.com/Store/catalog/Traditional_Breast_Binders-1-1.html make sure you get the lined binder if you choose to purchase one...they are much more comfortable.
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My assessment for truncal &/or breast LE went OK. LE Specialist MD doesn't believe it's LE but wants me in a compression bra and a return visit in 3 months. He feels at 7 weeks post exchange there's still significant post surgical swelling. So much for the fun bras on the bra thread - at least for now. He said to go back to the exercising I was doing before BMX in February and since there doesn't seem to be any involvement in my arms, I could fly in December w/o worrying about a sleeve. Post Op from my exchange on 11/14 but don't expect PS to add anything. Thank you all for your advice and comments. Jan
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Does anyone know about any other breast binders, for someone with BMX no recon.. ? thanx......3jays0
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I'm a week out of exchange surgery and trying to catch up here.
Betsy, I kept both sleeves on during surgery and I also wrote on my arms just in case the sleeves got removed while inwas under. The team was great aboutnfoot iv and leg BP. I was so anxious that I'd end up having a fight.
O2b, may I ask if the breast binder is worn all the time? I think I have truncal but now I can't tell what's post op swelling vs. LE.0 -
Kitty dog, brazos, Kay, o2bhealthy, Terri.......I'm late here to sending you hugs and brownies. This LE just plain sucks! I'm so sorry you are all faced with more challenges and just wanted you to know I'm thinking of you. Swelling, more tests, crappy garments, scheduling appts.....it's all just too much sometimes. Xoxox, Catherine
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olearca - I wear my binder 'most ' of the time when at home and when sleeping...I try to wear regular bra's for work just because my clothes look better but I sometime wear the binder to work as well (depends on pain levels).
3jays...I think these binders would work just just as well with no recon
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O2b, thanks so much!! May I ask if you've found a comfortable bra with implants and LE? I've devoured the bra 101 threadnbut thought I'd ask if you've found any brand that works best when you are not in the binder? I just keep buying, trying and returning. Thanks in advance.
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Olearca - I have yet to find a pretty bra that feels good
I do have compression bra's that I wear but sometimes I just want to feel 'pretty' so I wear regular bra's a deal with the extra puffiness when I get home...the price we pay for vanity 
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Can any of you recommend a good compression bra? Or manufacturer that is consistantly good? The doc has recommended a specialty shop with 9 different brands. Thanks, Jan
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Thank you for the well wishes of two years NED. You miss so much when you are not here for weeks at a time. Sorry to say this; but I sure am glad to know I am not alone when it comes to LE. I was recently measured and have pretty much stayed the same although I did have some areas that were larger than last measurement. The TP blamed it on my weight, which unfortunately is more than last year. She did recomend that I get a garment for my trunk. I think she was just trying to passify me though. She thinks my ribs are "displaced" from radiation. (?)
Been taking care of DH. We found out he has diabetes and within days he had a terrible sciatic problem that had him on his back for a week. Had the MRI, ruptured disc. He is usually very well natured but has been short tempered when in pain. I am keeping my cool though.
Be well...sending Pumpkin Chocolate Chip cookies for all!!!
BarbaraJo
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Hi Everyone,, I haven't posted in a while but I have been following, my thoughts are with you all. The waiting.. The discomfort... All so difficult, it does help me to know you are there. I had an oopherectomy in July, six weeks later was diagnosed with a 5cm blood clot in my leg because of having my IV in my foot. I have continued to have pain in my abdomen and told my dr and now they think I have developed a hernia as a result of the surgery too. I am having a CT on Thursday and see the surgeon next Wednesday. I'm pretty bummed and getting quite nervous about the idea having even more surgery. My LE is stage 1, but has become bilateral in my chest and sides. Im grateful that my arm arm hasnt swelled yet. Now I am affraid to have an IV in my feet or arms! Ugh!! My dr. Is ordering the flex touch as my left arm is fatiguing and I can't make it through doing MLD myself. Any ideas?
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Feeling sorry for myself this morning. Yesterday I made a spectacle of myself at a cafe. Slipped over and in an effort to protect baby GS who I was carrying I landed against a table LE side, arm on table and really thumped my side. Its really swollen this morning. I do have truncal LE. I just don't have the energy to get to the LE nurse and wont get appointment any way. I am sore there and in lots of other places, neck, knees, foot I seem to be making a habit of this. I know my arm is up but will massage that in a minute and get my heavier sleeve on. Any advice on helping this?
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Christine, I'm so sorry you've been through all of that--they felt the blood clot was due to the IV? When I researched leg IV's I found increased infection risk, but no clot information--but there was little information on the subject.
It sounds like the flexitouch makes a lot of sense right now. Hope you catch a break soon!
Alyson: I'd just think it's swelling due to trauma, and cool compresses and MLD and compression. Why do we always injure our "bad" side? Good thing your GS was okay.
Kira
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I'll be going tomorrow to find a compression bra. I've been looking at Bellisse on line. Are we not supposed to discuss specific brands? Just found out that Medicare will pay for a mastectomy bra but NOT for a compression bra, even with an Rx. And so my supplemental ins will not pay anything either since Medicare won't approve. Sigh.
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MinusTwo: the Belisse bra is expensive, and when Jane/onebadboob met the woman who created them, she helped her find the correct size.
I don't get why insurance won't cover the Belisse.
Have you checked out the other brands?
Kira
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MinusTwo
Please double check-- my insurance did cover the Belisse bra and it is great when fitted properly.
The breast binders are also great.
Please see http://www.stepup-speakout.org/breast_binders_lymphedema.htm and
http://www.stepup-speakout.org/compression_bras_lymphedema.htm
Sorry I cannot get the links to work from my iPad. Just copy and paste0 -
Kira: No, tomorrow is my first trip to look at compression bras so I'll be looking at several brands.
OneBadBoob: I have original Medicare with AARP/United supplemental. Didn't talk to Medicare yet, but I'll sure try. Thanks for the other recommends. I'll check them out.
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3Jays,
The binder I got from expand-a-band works for me, I've had BMX.
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thanks outfield. i'e tried the other, just not enough compression for me, and armour shirts dont work, cause i keloid areound the port.. when i fee better, we'll start with the ps to fix the port, but in bed so much, my truncal on the none bc side is swelling a lot.. will google it.....you ladies are the best!!!
Alyson; might want to talk to the pcp, and get your balance and ears cked. i fall, and it inner ear, and this is many times you've been caught off balance, now, girl. hope your swelling goes down. when we whack ourselves, we pay!!!
christine; i hope things will get sorted out soon.. a blood clot? oh my!.....3jays
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MinusTwo, we do discuss specific brands. So far, no problem with that. Can't actually imagine how we could help each other out without being specific.
I use WearEase compression bras and compression camis, and because they have prosthesis pockets my insurance covers them as my mastectomy bras. I assume they'd do the same for Bellisse. I use a fitter who does both mastectomy fittings and LE fittings, so she simply codes them as mastectomy bras. It'd be up to your fitter to make that work, I think.
3jays, are you lying on your side? Back sleeping is best for truncal, but I hate it. "Cincerely" got advice about that from therapists during her intensive therapy for RIBP, and they suggested using a pillow for your head but making sure your shoulders are on the bed, not on the pillow, and putting another pillow under your knees for a more comfortable sleep position. It's working well for me and really helping my truncal LE (but I still hate sleeping on my back and just wish to heck I could dump all the compression and curl up on my side!
)GRRRRRRRRRRRR!
Binney0 -
Binney: Thanks to your recommend on the StepUp site, I ordered a WearEase today before I even saw this message. Nothing in Houston to try on so I ordered from the factory. She did give me the code to file for insurance as a mastectomy bra so Medicare should cover some of it. I loved the way the Bellisse fit but they're really pricey.
Thanks to all for your advice. Sending positive thoughts for everyone else.
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Grrrrrr........ I went to pt today about swollen hand with new sleeve and glove. He said he got this one for me because it was inexpensive and I'll get a new one once I'm done rads because he thinks my arm will improve more after rads. He thinks the problem is the glove which he could send back, but then I'm back to wrapping. He put a thin foam pad inside the glove on the top of my hand. My hand was even worse when I took the sleeve and glove off tonight. It's really quite ugly and swollen. Looks like I'm back to wrapping 23/7 for a while. Grrrrrrrrrrrrrr.........
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