GRRRRRRRRR I HATE LE..........
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Been wrapping 23/7 with CDT therapy for 60 days now and had my arm and hand under good control. I am just waiting for my new compression sleeve to come in so that I can switch to sleeve during the day and wrapping at night. So everything is hunkydory! Not so fast..... I wake up early this morning because my bandages were bothering me, When I unwrapped I discovered that my arm and hand were as swollen as I have ever seen them and I had swelling in new parts of my arm as well........ I do have a small sore starting on that arm as well, maybe that is the problem. So, I guess I get to start all over trying to get this back under control as my new sleeve will not fit with my arm the way it is right now. It seems to be one step forward, two steps back sometimes. GRRRRRRRR.
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cindy2: Soooo sorry to hear that. 60 days in bandages . . . what a champ. How frustating, disappointing, MADDENING it must be to have a setback like that. (((hugs)))
I only bandaged for 2 days last week and not only found it extremely painful, but it increased my swelling. I've since gone back to Lebed exercises and MLD to get things back under control. I still have some swelling but it's mild. I can sure feel it, but it's not overly conspicuous unless you do a side by side comparison. My therapist recommended the new circaid juxafit glove and sleeve. I'm scheduled for a fitting next week. Has anyone had any experience with this product?
Thanks again to everyone for sharing your knowledge and expertise. I trust this site more than any other resource when it comes to lymphedema. With the info I've gathered I've been able to work better with my therapist and I feel less like I'm flailing out here alone xoxo
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Hi, an LE newbie here.
I was certain that I had developed LE (albeit, very early) and sure enough, I was offiically diagnosed by my MO yesterday - with grade 1 - or early LE, but other than some slight (almost unnoticeable swelling in my elbow), the main symptoms were heaviness and a weird aching/tingling. No one would have picked up on it and everyone kept telling me I was fine or that it was the weather or my nerves regenerating. I am only 3 months post BMx but had sentinel node bx and sure enough, now LE! I was lucky enough to get into a CLT yesterday and she measured me and did some great MD and stretching etc. I will now see her twice a week for awhile as I learn how to manage this. I am really pissed off - sad, angry, overwhelmed - but these threads have been such a great source of support. Ahhh, Breast Cancer ....the gift that just keeps on giving.
Thank you, thank you for letting me vent. My mother has LE from axillary LN dissection during her UMx 20 years ago. She is terrible at taking care of herself or managing it and it was my worst fear. I can't believe that only 3 months post BMx, I am now joining in this life long journey to live/mange it. I will stay on top of it, that's for sure.....but darn, I do did not want to have to be here. Thank you for listening. I can see how valuable this thread is going to be. You all know more about this than any of the doctors I've seen (world -reknown MDs blah, blah.....)
Catherine
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[[[[[Catherine]]]]]]] - Welcome, although I'm so sorry you're here! This thread has been huge for me ... I''m sure I would have been locked up by now if it wasn't for the support and knowledge of the ladies on here.
Good for you for getting early treatment! One of the things I've learned on here is LE does NOT have to progress if you take care of yourself. And you're doing that! Yes, there will likely be flares, and setbacks, but it doesn't mean you have to stay there. Drink lots of water too ... that helps keep everything flushed out & reduces the swelling. All of us have certain triggers that it make it worse, like eating salt, or MSG, or heat, or changes in the barometric pressure and you learn how to cope.
My heart goes out to you. I too had only my sentinel nodes removed and developed LE. We weren't 'supposed' to get it. GRRRRRR! Come here as often as you need to vent.
I've learned so much here and there's something healing in the fact that others know what you're going through. It's been about a year since I was diagnosed and I thought my world had come to an end. I was so depressed and ANGRY! I've always worked out and taken care of myself and I felt like all of that had been stripped away. Not only were my breasts gone, but now I couldn't do the things that made me happy! It was a tough road ... but I'm getting through it with the help and support and encouragement of these ladies. I'm working out again, I'm getting my strength back, I can't do everything I've done in the past, but I'm learning new ways and new things to do to stay in shape. BC and LE can take my breasts but I'll be d@m*!# if I'm going to let it take my life and the things I enjoy.
Blessing to you, Catherine! xo
YOU CAN DO THIS!
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Catherine, it totally stinks to join the "swell sorority" and unfortunately, there's widespread ignorance of the condition and how to treat it. Good for you to be pro-active and figure it out early.
Sounds like your MO is informed--which is great, and unfotrunately, not that common.
Learning to manage it is key: not so easy to accept it.
Cindy2: that's horrible about swelling under the wraps--did you let your therapist know?? If you have a sore, you sure don't want to chafe it further--antibiotic ointment and watch it closely.
So many of the women on these boards don't do well with over-compression, and it's all too easy to trap fluid and create an inflammatory response.
Let us know how you're doing.
Kira
Oh, I've been to the Survivorship Course at Dana Farber, and their Livestrong Clinic mission is to treat LE, yet they don't know how, and this year's course doesn't even have it in the syllabus. And we wonder why our oncs and surgeons are clueless?
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Catherine - bravo to you for pushing until someone on your medical team took your concerns seriously. Thanks to your instincts, you were diagnosed when you still had early stage LE. It's so much easier to deal with early stage!
A LE dx is really crushing, I think. I didn't cry when I was dx with cancer, I didn't cry after the bmx, didn't cry when I lost my hair, but when I was dx with LE I broke down and sobbed. Go figure. But with some trial and error, you learn to manage your LE and, especially with early stage, it becomes just another part of your life.
My dh has scoliosis, and he's learned that when his back "twinges" he needs to STOP immediately and tend to his back. He's learned that the hard way over the years after one too many trips to the ER in excruciating pain! I've learned the same thing with LE. It's there, you need to take it seriously, but with early stage it doesn't have to dominate your life.
The key is accepting it and then being pro-active. Denial and not taking care of it is the worst thing you can do. From what you say, that's what your mom has done with her LE much of the time. I'm sorry your mom's LE has progressed, but in a way she can serve as your role model - for what NOT to do.
And yes, there are some fabulous women on these threads, especially Binney and Kira. Like you, I had the world-renowned surgeons, etc. NONE of whom took LE seriously. The women on this thread knock those world-renowned surgeons right out of the box when it comes to LE expertise.
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Dawn, Kira and Mary,
Thank you so much for not only the warm welcome, but the total understanding of how I am feeling. I am really devastated and it is just coming on top of the "grief" curve for me now. I am waivering between sadness and anger all the time - which I *know* is normal yet its such a fragile place and my real life friends, family, kids, colleauges, just want me to get back to normal already! This really threw me for a loop. I am grateful that you are all here - and thank you for validating my feelings. It's helps much more than I can express.
xoxox, Catherine
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Quiche ....I think we are really similar. I still kinda like my silverwave bi-lat from lymphadema sleeve co...it is very low compression 15-21...but it has these little wiggles that help. I wear it as a night sleeve though I have a juxta as well. I wear a regular juzo custom 20-30 during the day.0
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Catherine, it's so hard. We all want to be back to normal, and LE won't let us move forward sometimes.
I also found LE harder to handle than the original diagnosis--I was kind of in shock for that, and LE just unraveled like a train wreck in slow motion, and I was so lost until I found this board.
It becomes the new normal, and it is managable, but it's so hard not to resent it and also resent the providers who were less than helpful along the way.
Sometimes Binney and I talk (yep, after a couple years of email we finally met in person, and when I broke my LE hand, I called her sobbing...) about the fact that we stick around the boards, and is it "healthy", but in the end, I feel like we can help and it's a place were people "get it" without translation.
Kira
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Well, I saw my lymphedema physiatrist recently, and it was my last appt with her. I had received a letter announcing she would be starting a new position after September. I felt incredibly sad after reading the letter. I could feel that panicky "Nooooooooooo!!!!!" inside like a child when they realize they are "lost" in a store and can't fine their loved one.
It was my second time seeing this dr. since my deconstruction surgery, and like the last appt, she had someone in with her and she had told them about my journey to Charleston. She is still amazed I am pain free since my deconstruction. After talking about how I am doing, I mentioned about her leaving. She talked about what she will be doing - work in another field to which she is also dedicated. She said that she was going to miss working with her LE patients. I then thanked her for everything she had done for me, as she played a vital role in helping me decide where to have my surgery. I had promised myself I wouldn't cry, but I couldn't stop the tears. I said I was grateful she had been able to follow my story from start to finish and see the positive results of my surgery.
My dr. then acknowledged me for telling her about Dr. Massey and the proactive LE care she and Roper Hospital provide to mastectomy patients and patients with LE. She said she had learned a lot from my experience. Okay, I can't remember a doctor ever thanking me for sharing info and helping them learn something!
It was a bittersweet moment, as I realized I had passed a milestone and needed to finally start moving forward with what's next in my life. While my dr. gave me the name of someone who can follow me quarterly until they permanently fill her position, I am no longer in "crisis" mode and it will be for general followups. She will never really know and understand my experience - just like all of my other local drs. My "story" has come to an end, but after two years of chronic pain and being unable to concentrate on much else, I'm a little at a loss. Much like the clothes in my closet that no longer fit and needed to be replaced, I need to find a new path and create the next chapter of my life. So much to contemplate . .
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I have just recieved my first sleeve ( it is 20-30mg Hg) and Jobst with gunlet and NOT custom. If I understood the store that I recieved it from they would be charging my insurance $250.00?? Does this sound correct for noncustom sleeve??
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christine - A sleeve usually costs me at least $50 and a glove costs somewhere around $150. I don't know about a gauntlet, but I would think it would be in the same range.
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Dawne-Hope,
thanks for your input, this just seemed abit high to me. How long do the sleeves last?? I expect to wear mine just for travel and exercise (my LE is very mild, had to beg to see a LE therapist and get her to write rx for sleeve, she could not measure a difference but I feel heavy at the elbow at times).
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sleeves last six months or so.
I too have no measurable swelling in my arms, but I do in my fingers and my arm feels heavy at times. I wear my sleeve & glove for exercise and whenever I'm going to be outside in the heat or doing any kind of lifting or reaching or driving.
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just sitting here reading, mostly dropping by for a minute or so. i'm in holding pattern, for the most part. have a new topical tx they said for the nueropathy, but it helps with the sting and burn from le too.. neurogen; otc; smells strong, though. basically, bergomet oil..it does help, tho. anyone else ever try it?? 3jays
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Christine, what garment providers charge our insurance is obscene, so no doubt that's about what you could expect them to charge. Are you paying a percentage? If so, you might want to check on-line (LymphedemaProducts or BandagesPlus, for instance) and see if buying it outright saves you money.
Gloves are very expensive because they're so tricky to fit -- all those individual fingers. Gauntlets are usually not as pricey.
Garments last six months or so if you wear them daily -- possibly longer if you don't need to do that. When we wear them every day we need two -- one to wash, one to wear, which also extends their life somewhat.
Good for you for taking charge and getting help!
Tina, I'm feeling that loss with you -- it's so hard to lose the help of someone who's been through this with us. But congrats on all the progress you've made (and on all you taught your doc
)! Onward!Hugs,
Binney0 -
Just visited this thread after a vacation from the boards, and always feel that there is no place else I can turn to find others who understand the challenges of LE!
Regarding sleeve life: what do you use to wash your sleeves? I find the " flesh" colored ones always look grotty after a few wearings and thre is no way to get the hands very clean looking again. I know they are clean but they sure do not look it!
Regarding life and its changes after LE: having major hot flashes has been a real challenge! I tend to get very hot in the bend of my arms and it is all I can do to stop myself from ripping my sleeves off in these moments. Trying to lose weight to see if this will help a bit, but having the sleeves makes even a tank top a toasty proposition. Any tips for the compressed and heat oppressed?
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Have you tried a little pump-spray bottle filled with water? I first met this approach to hot flushes when I was travelling on holiday in Israel just before my BC diagnosis, then last year I met a lady with bilateral LE sleeves who sprays both her sleeves with water this way to cool down. I'm a little worried whether going around damp might be a party-trip for germs or fungus, but she swears it helps her keep cool.
Moogie I'm sorry but my sleeves go in the wash with everything else; I use those little net laundry bags they make for hosiery etc to protect them and everything else (I have up and over sleeves with velcro attachments). Last thing at night I just can't be doing with messing around handwashing, and they don't dry off overnight if I do. LOL your "flesh" colour comment, I found that a few trips in the machine along with blue demin or red tee-shirts can get them to a less obtrusively unnatural hue, now how to get the freckle effect?? I almost went to the paint-store for those mix-your-perfect-match colour charts, to find how bad a match they are, and how six months' general laundry improves this!
Re grubby hands, has anyone tried washing your hands normally (including the sleeves) after a grubby job? Seems like we try so hard to keep the sleeves clean and dry, although that's not really possible, maybe the second skin approach might be better? I'm not doing that at the moment though as I'm trying particularly to keep the thumbweb dry. I currently have a breakthrough of athletes foot that I thought was in the past. Boooo. Pump-spray terbinafine for me.
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Tina--I know how you feel. My therapist says she does not need to see me if I keep doing as well as I am except for measuring for future sleeves. I almost panicked. She did say I could email her any questions and call if I swell. She said I have all of the tools I need.
Christine--I had a Jobst custom sleeve and glove made. The glove cost $260 and the sleeve $150. I got a gauntlet with my second sleeve but have not yet seen the cost as they are waiting on insurance.
Moogie--I use Dreft to wash my garments. I did buy the Jobst wash for garments but it does not last long and my therapist said Dreft was just as good. I have only had my sleeve and glove for two months (flesh colored) and does not look worn yet. I do hand wash a set each day after I exercise. Once in a while I do put in a laundry bag and wash in machine as it seems to tighten it up some.
Becky
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Moogie: I wash my gloves in a garment bag with the usual detergent: All with no fragance--no fabric softener. I usually air dry them, but the occasional glove is in a pants pocket and gets into the dryer--and they seem okay.
Tina: it's the end of an era and now there's a new one, and these transitions, even if good, are hard! Especially loosing your LE doctor. So many changes for you to assimilate.
Moogie: there is some concern about constantly getting garments wet, but could you get a water spray for your face/neck/chest?
Chrisitne: they charge our insurers about 250% of wholesale, and usually we're responsible for 20% of what insurance "allows". Insurance tends to mark down garments below wholesale cost, so it's a game they all play--the distrubtor tries to not lose money and make a small profit (I had a major DME (durable medical equiptment) company tell me they were getting out of the LE business because it was loosing them so much money) . The people who get hit the hardest are those who pay out of pocket--like medicare patients.
Kira
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OK, so this is wierdness time I think.
A couple of months ago I noticed small lumps/nodules in the palm of my LE hand. I suspected it was ganglions (I'd had that before though not on my palm) & my pcp thought it was, too. Today I noticed what seems like cording from the base of my thumb to about 1/4 of the way across my palm.
Anyone ever had this?
Leah
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Leah, cording can definitely go to the base of the thumb--that's how mine showed up--I couldn't grip a pen. You can see it in the picture on the AWS page.
That said, there are all sorts of tendons in the palm, and they can get thickened--Dupuyten Contracture--I've mostly seen it in the fourth, fifth finger, but I'm no hand surgeon...
Ganglions are joint fluid that makes a cyst. The old way of treating them was to slam them with a heavy book. I once watched a ganglion surgery, and they have to go all the way back to the joint to take out the cyst.
http://en.wikipedia.org/wiki/Ganglion_cyst
check out this link:
http://en.wikipedia.org/wiki/Dupuytren%27s_contracture
So, it may be cording in the thumb or a thickened tendon. Kind of doubt ganglion. Are you going to see a hand surgeon?
Kira
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I am going to call the folks who got me my sleeve on Tues, looks like they are out of network and I will need to pay the entire amount (I have met the in-network deductable amount, over 20 times with chemo, scans, surgeries, etc). I am hoping they will just charge me the insurance allowable.
thanks you Kira for all your knowledge.
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Kira, thank you for your answer & the links.
Years ago I had a ganglion on my wrist (same place as the illustration in the article). On the advice of my pcp I didn't do anything since it caused no pain or disruption of function. Since that's the case with the ganglions now I'm inclined to do the same thing. The one I had went away on its own after about 20 years. I kind of hope to see this stick around that way too. Actually I want to see me stick around for that long.
Neither the ganglions not the cording is causing pain or disruption of function so I'm inclined to leave them on the sophisticated philosophy of "if it ain't broke don't fix it". I haven't seen a hand surgeon though on of these days I will just to confirm it's nothing serious.
Sigh. Another doctor.
Leah
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Moogie, I wash my garments in lingerie bags on a gentle cycle and use Ivory Snow or Dreft. On the advice of one of the garment makers, I also toss in some baking soda, which is the active ingredient in Oxyclean. I buy it in quantity at Smart & Final or a restaurant supply place.
Spraying your garments to cool you off is not recommended unless you live someplace dry, so that the garments dry again in a short time (say 15-20 minutes). Longer can encourage nasties to grow. Same goes for the "second-skin". I do that when my gloves get gukky, and some months I can just dry them on a towel and wait until they dry (I live in a desert). In winter it's just plain too cold to run around with wet hands. But washing them that way and then taking them off works really well -- you can get the really grubby parts clean that way (I use a net scrubby.) Just don't stay wet.
Leah, bummer! Hoping you get clear answers real quick!
Be well,
Binney0 -
Binney, who knew that baking soda is the major ingredient in oxyclean???
Christine--it they're out of network, you end up eating the fictious "retail" price. I wear a custom juzo glove, and they charged insurance around 400$ and insurance allowed $200, and I'm responsible for 20%. I also wear "off the shelf" medi 95 gloves--they're okay for me, and when I don't want to trash the custom glove I wear them. And I can find them on-line for around $119 or so, and once I went through insurance they said they cost $250. I met the head of medi USA at the NLN conference and he was kind of upset that I didn't go through insurance, but sometimes it's just easier to order it online...I never do order the 2 gloves/6 months, but I don't wear them all day. My good fitter just had a baby, and I sure hope she comes back from maternity leave.
Leah: if it's not broke, don't fix it. IMO.
Kira
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I love my 'Lymphadiva' sleeve, they are great, soft, comfy and have patterns and designs! I have had mine a couple of months my insurance paid for 3 sleeves & 3 gauntlets. 0
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I've been fitted for custom garments by an out-of-network fitter and by an in-network hospital-based LE therapist (who then sends the order to a DME company). My insurance has always paid for the garments the LE therapist orders and has never paid anything when I submit claims for garments I got through the out-of-network fitter. I think the diffeence is that my LE therapist includes a detailed letter of medical necessity co-signed by my rehab doc. (I read the last letter, and my diagnosis is now stage 2 LE
)WRT costs, I've had about 6 different brands/types of custom daytime gloves and, depending on the brand and type, they have run between $225-300. My custom day sleeves have run between $125-140. -- KS1
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Hi ladies..........I have 1 custom sleeve by Jobst..............I paid $150.00 for it.......at the time I paid myself while waiting for an answer from the insurance company.
Odd thing is I still am not wearing it...........after the first sleeve being made wrong , this on doesn't look any better......hurts like a bitch..........I will be going to the LE specialist with the sleeve and ask her "WTF is with this sleeve, and the bullshit that goes with it..................in the meantime I continue to wrap..............that is when I do, disgusted with the whole thing...........
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The place I got my custom made Juzo sleeve charged $158. Insurance allowed $50 and I had already met my deductible and only had to pay $10. The off the shelf gauntlet was $23, Insurance allowed $15 and I paid $3 for it. I am so happy that it is almost time to order a new one.
Having some more swelling but I am sick yet again. So it appears my sinus respiratory infections are going to play a big roll in my LE. uggggg
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