GRRRRRRRRR I HATE LE..........
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I put this question out on another tread, DesignerMon suggested I should place it here.
DesignerMom, I have a question about LE. So far I don't have any pain, but I do notice that there seems to be swelling under my arm pit, not like a lump just like fluid buildup. Is this what leads to LE?
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Here is my question of the day!
With arm LE they do measurments and seem to have some sort of staging and standard of care.
With truncal/breast LE, nobody has ever measured anything, and it seems like even therapists and doctors are not as concerned with a flare.
Is truncal simply easier to resolve? Easier to hide? Less progressive? Or just less understood?
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Less understood, and less easy to measure and diagnose.
It's easy to calculate the volume of a cylinder (an arm or a leg), next to impossible to do it for a trunk.
And truncal/breast LE is rampant with SNB.
I'll share a good Lymphology article:
It's the last line on the page, and links to the full article
http://www.stepup-speakout.org/breast_chest_trunckal_lymphedema.htm
Cookie, most doctors don't know how to deal with it, so they don't get concerned with a flare. We have a patient in our office who had breast cellulitis BEFORE rads, and I gave her an antibiotic script when she finished, and she traveled to a foreign country and developed a whooper cellulitis, which we're still treating, and was able to take the oral antibiotics and skip the admission to the local (scary for her) hospital--yet when she came into the office with this, the rad onc was underwhelmed--I was not, and got her to the surgeon immediately, and she's heading into wound care. The patient told me I was the only one who seemed to care. It's because I recognize what it is....
Kira
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JO--Don't panic! You will probably not have to go that long. My problem was not getting a good therapist. I went three times a week to get wrapped--MWF. I could get certain clothes over the wrap--usually the button on long sleeves would not button. I was told the first day that "I hardly had LE and would only need three weeks of wrapping" then would be in a sleeve for exercise, heavy lifting, gardening, etc. They only wrapped to just above my elbow. Now the fluid is in my upper arm. They only measured my right arm (affected one) and never measured my left for comparison. I could not tell it was swollen. The MLD consisted of about three minutes of pushing fluid from my affected neck side to the affected armpit--with clothes on--about three minutes worth. As time went on (I saw four therapists, never knew which one I would see each time) I could not get answers as to how long this would last. They did give me Zuther's exercises but did not tell me to go slowly so I did them incorrectly at first. The more I read on this site, the more I knew it was not correct. They did kineseo tape my breast which gave much relief. The said they did not know anything about "stages". I teach and after the school year was out (9 wks later) I was able to get a LUNA certified therapist fairly far away. What a difference. She told me I was already in Stage 2 and hated to do so but needed to wrap me for a few more weeks. 45 minutes of MLD three times a week, checked to see if I was doing exercises correctly, discussed skin care, etc., everything you read on SUSO that a good therapist would do. Measured both arms. I had a 21% reduction in a week. I had to continue wrapping two extra weeks to wait on my sleeve and glove. I am heartsick that I did not go there first. I think my outcome would be different. I did learn to unwrap and rewrap myself on the weekend. I got my sleeve and glove last Friday and it is wonderful. Right now I am to wear it all of the time except to shower and do MLD. I wrap at night but have a jovipak coming soon. I still go three times a week but she is going to cut back to twice next week. Oh the other place told me that they did not help with getting sleeves, etc. and told me to find an orthopedic place that did so. This therapist has done all of the measuring and called the fitters herself and helped with insurance, etc. So, my advice is to ask all of the questions up front since you have read this site before you start and know what to look for. Oh, to shower. Put a 13 gallon garbage bag over your arm, rubber band it at top of wrap and again at wrist. I had no problems showering then. I learned to hold a pen a certain way to write and typed on computer left handed. If you have other questions on adapting, let me know. I love the freedom now of the sleeve and glove. I still cannot believe I have LE as there is not much swelling, but I do have some fibrosis in the skin. Becky
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kira, It sure sounds like it. I wonder if having the mammasite type of radiation causes more damage to the lymphatic system. I have the swelling in the breast as well as the feeling of fullness. In fact I started wearing my regular non under wire bra this week, and the side I had the lumpectomy on is bigger than the other side. At least knowing this takes some of the fear away. I was really afraid it might have come back.
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hey swell gals... i've been lurking for quite awhile, just nodding, and going along for the ride... i did want to tell JO: wrapping to me isn't a horror at all. maybe its; bc i don't HAVE to, most times.. i can opt for a glove/sleeve, and i do sometimes... i just don't care anymore! i find wrapping (my hand) mostly..that gives me the most relief. i have to keep practising so i don't do it too tight... but i really
D
O get the relief i seek, only if i wrap it. its' on my dominant hand, so it gets no rest.. i also have neuropathy in that hand. i've taken to alwya wearing an "earth" natural glove (aloe based) wether im wrapped, or not. ive gotten used to the questions, and it looks weird, believe me, in so. Fla with what looks like a winter glove on!the warmth soothes both the neropathy, and hides the wrapping. i have light and dark gloves, so i make it a fashion statement!!! just my HO 3jays
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Well I went to Khols today but I did not find the bra in my size. They only had a few which makes me wonder if it is being discontinue. Walmart didn't carry it either. I did end up buying a bra. So far I find it very comfy. I think the band sizes runs big and could go down one size. Now I can't tell you whether your foob will do go in it because all I have is a lightly weighted foam one. It is sliding all around. If I like it well enough, I will go buy the pockets and sew it in. Gee it is so much more comfortable than what I was wearing so only time will tell.
My arm is back down but I still have that golf ball feeling under my arm. I still have days I just say forget it and take a break from compression. I think we will always have those days. I hope that I will be one of those lucky few that can safely take breaks from wearing the sleeves. My hand looks puffy today but I had to take my gauntlet off. My fingers were turning purple too much. While I am at my fitting tomorrow, I am going to see if she can give me a size 3 in the gauntlet. I think with the summer heat on, I just need for it to be a wee bit bigger.
gee I forget to post what bra I bought.
http://www.kohls.com/kohlsStore/intimates/bras/fullfigurebras/wirefree/PRD~233769/Bali+Double+Support+SpaClosure+ComfortU+Back+Bra++3372.jsp0 -
Jo - in answer to your question about does anyone ever get to the point of not having to wear a sleeve all day every day - I am one of the lucky ones. Two and a half years ago, I was dx with Stage I arm LE, and went through the CDT to bring it under control. Since then I am very good about observing the LE precautions my LE therapists have laid down for me and that I've read here. I religiously wear my sleeve and gauntlet when lifting weights, doing yoga or Pilates, gardening, painting, flying, or doing anything else that stresses the arm. I avoid things that stress the arm too much, such as certain yoga positions or lifting heavy objects. I do MLD and Lebeds regularly, and I measure my arm at least weekly to monitor it. But two and a half years later I am very very lucky and do not have to wear my sleeve every day and do not have to wrap or wear my "oven mitt" every night - I do that only when I've stressed the arm or feel that something isn't "right" with it.
The ladies on this board were the ones who convinced me that I was right to take my arm swelling and heavy feeling seriously. Because of them, I got to an LE therapist early when my LE was still Stage I. They also taught me that not all LE therapists are equal, so thanks to them I've had two excellent LE therapist give me the tools to help control my LE - I was taught MLD & wrapping (they even had my dh come in for a few sessions and taught him MLD and how to wrap), given exercises to help strengthen the arm, fitted properly for a sleeve and gauntlet and an "oven mitt", taught how to measure my arm, and taught the standard precautions to take.
My LE therapists and the ladies here have also pounded it into me that this condition needs to be take seriously for the rest of my life - just because I'm pretty controlled now, there's no guarantee that I'll remain that way. So I'll continue to see my LE therapist every 6 months (or more as needed), continue to observe the standard precautions and do everything I can to remain one of the lucky ones.
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Becky: what an amazing post--unfortunately, quite a few of us have had bad initial treatment--Binney had a woman who created LE in areas that didn't have it before. She's tried to have her sanctioned, without any results.
I had this Harvard based PT tell me to wrap just to the elbow, and when I got a pocket about the elbow, she told me it wasn't LE. And she was always going on about how she was trained at the Foldi clinic--yeah, but training is worthless without good clinical judgement.
JO: my first jovipak I ordered from this fitter that jovi sent me to, and she mailed it to me, no explanation of how to use it, and never checked the fit. And, unfortunately, it didn't help my hand swelling. She also mailed me gloves and never checked the fit.
When I was at the NLN I talked to the jovipak people about her, and they said "Oh, we have lots of fitters who call back and have concerns, and she NEVER calls or has concerns." And I told them it's because she doesn't check.
That fitter tried to balance bill me for the difference between insurance rate and retail, and like a fool I paid her, and then called Blue Cross who went after her for the refund. And, I called Blue Cross to try and get her a higher reimbursement. Come on--I worked in insurance--this whole LE thing is so upsetting, we just go along and hope we're in good hands.
This board, and Binney were what got me into good care, and I kissed a lot of frogs before I found someone good....
Kira
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Experimental surgery that may cure LE
I don't have LE so I hope you don't mind me posting on your thread but thought this sounded very promising
Also thank you all for spreading the word about this issue which was never mentioned to me once by any of my surgeons!
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My MIL has started getting treatment for her LE that I told her she had in her leg last year after colon cancer surgery. I have a question from her, Sunday she was wearing the leg compression garment but she said that her foot was swelled with red streaks on it. She was going to the ER after lunch to see what it was. I told her it was probably cellutitus. They did diagnose it as that. My husband called me this afternoon to see if she should still be wearing the garment. I told him that I didn't think so until the infection was cleared up because of spreading the infection throughout the body. Was I correct in telling him that, not that she would listen to me?
Sheila
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Sheila, we usually avoid compression during cellulitis, because we don't want to limit blood flow to the area, and want to get those antibiotics in there. And we don't do MLD because we don't want to spread it.
Once it starts to get better, she can resume compression.
This sure stinks.
She should listen to you!
Kira
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I just checked out Step-Up-Speak-Out and found the answer to my question. I was right about removing her garments. But as I said earlier, she doesn't always believe what I tell her.
Sheila
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just cking in here tonight. practicing typing in my gottfreid gloves.. it almsot works!!! i could never had gotten where i am w/out Binney, and Kira..i hope they both know how much i appreciate them. bc of them, i've learned to fight till i get the correct fitting, and to be vigalant with wrapping, wearing my "gear" this year, ive had to limit salt to the nth degree. so far, so good.......3jays
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I know Kira, she should listen but what do I know!
Sheila
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Sheila, sounds like my--now departed--MIL. Frustrating, to say the least.
Kira
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Kira--What did you mean when you said Binney tried to get someone not competent for LE sanctioned? Reported? Or maybe Binney can weigh in. It breaks my heart to know of the people going where I was going and not getting the right treatment. I am in the Appalachia area and many are extremely poor and not well educated and do not know that what they are getting is not sufficient. At first I only told my new therapist I was not satisfied with the treatment I was getting and that she came highly recommended which is why I switched . As I am getting to know her better and tell her what their method of treatment was she is shocked. I wish there were ways we could get the ones not doing treatment well "debarred" from treating LE. As I tell my students that is my sermon for the day. Proper treatment of LE is just a crap shoot! Becky
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Becky, the incompetent Weekend Wonder therapist was at a hospital PT clinic, so I complained to the hospital's patient relations department. They were very interested, and we had two very long talks with them and the clinic head, and I supplied them with the NLN standards for treatment, which they were completely unaware of. They agreed to investigate, suspended the LE program for awhile while they apparently did that, and then reinstated her, with no further training. She's a PT, and the PT organization is an extremely strong lobbying group, and they're the biggest opposition we have to adequate therapist training.
The PT association believes that PTs have already had to go to school long enough, and that they know enough about anatomy and physiology to figure out LE therapy without further training. But specific LE training is not part of their curriculum, and certainly not 135 hours of it, which is the standard. What that means is that, while other kinds of patients have the right to bring grievances about their care to the PT review boards, those of us with LE are unlikely to get a fair hearing from them.
That is why the LANA organization was started, to give therapists (PTs, OTs, MTs, RNs and MDs) a way to register the fact that they have the necessary 135 hours and a degree of competency on a written test. But LANA has no review board and does not process, or even accept, patient complaints. When I've pressed them to consider some kind of patient advocacy as part of their licensing process they simply didn't respond.
The new legislation that has been proposed to take care of problems like this has now been modified to only address payment for garments, not therapist training standards. As I say, the PT and OT associations have very strong lobbies. They're deeply entrenched, and I have no idea how we can fight them.
Any suggestion, anyone?
Binney0 -
grrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr grrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr
I had a bad allergy attack yesterday and my body couldn't get over it. I woke up sick this morning with what I am guessing will be a full blown sinus infection before bed time. I am beginning to think I am jinks with getting my prosthetic. I will reschedule at another time. It hurts to talk even.
Hoping my child will allow me to lay on the couch today.
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Jo, what you're most concerned about is the complete therapy, so the one that outlines what needs to be included would be best. It gives you some talking points if you don't understand anything she proposes. Hopefully she'll surprise you with her thorough and caring presentation of her plan.
Hugs,
Binney0 -
LE specialist says I might be measured for my compression garment tomorrow.......only had 6 visits.............wrap everyday, and do very well with it according to her.............I do feel restricted when I have the wrap on...............It is my dominate hand, and I can't stand when it gets wet..............I try to be careful, but how do you do all the shit with water you have to do, and not get the thing soaked.................I am clumsy with my left hand. It is really the water things that annoy me.........maybe the sleeve will be easier..................no problem with my hand mostly fluid in my upper arm.............It is all apain in the ass. hate it
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well I don't know why I thought I would get satisfaction from my rads onc.... she acted shocked I had lymphedema, and told me to lose weight.
Don't get me wrong she was basically pleasant and sympathetic.
She really kind of dismissed my breast LE which was the worst it had ever been today. I asked if she thought a compression bra would help and she said no. Sorry I was a chicken about handing her an article.
On the bright side the receptionist remembered my name from more than a year ago.
At least that made me feel like a human.
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Do you think I could strangle a dog with my LE arm..................If the little freak next door to me doesn't stop barking soon, I am going to go outside, and wring his little neck.................I have an asshole for a neighbor. Try taking a nap with that little bastard barking his head off.............Oh well I'll just turn on my Bose radio and blast that, at least I won't hear the dog................
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Cookie, that makes me just steamed!
GRRRRRRRRRRRRRRRRRRRRRRR!
Binney
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Cookie, my rad onc specifically told me that no evidence existed to show that radiation to the level one nodes caused LE! And, I was too stunned to just look it up and dump the hundreds of articles that show that radiation causes LE on her desk.
I work in a rad onc facility now, but I still remember the day, getting the boost, when the techs were treating me like a piece of meat, and said "Oh, yesterday we overshot the field" "Oh, sorry, we'll try not to do that today!" And I stormed into the rad onc's office and she said "Why do you worry?" and I said "Because it's obvious you don't"
It was the techs who showed me how high up the axilla my field went. And I had LE BEFORE rads!
I do not work where I got rads.
I wrote before about a patient who had breast cellulitis BEFORE rads, and developed some breast LE, and traveled to a South American country right after rads, and I gave her a keflex script, and sure enough she developed a breast cellulitis, in a country with limited medical facilities. And, when she came back to see me--draining tons of pus, both the head rad onc and the breast surgeon were underwhelmed. Now, a couple of weeks later, I finally have the breast surgeon on board. Initially the breast surgeon wrote a vaguely nasty note that it would have been nice to get a culture, but she'd started the antibiotics I'd given her....The woman could have been very, very sick in a foreign country, so sorry I messed up your culture.....
I work in rad onc, I see breast LE all the time, and yet I can't get the other health care providers on board: the staff just have the patients see me....
The patient said "Why are you the only one who cares?" and I thought, because I have LE and I'm the only one who knows what you have.
Frustrating, and brings back my frustration of being a patient.
Kira
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Next time you want a good nap put the sprinkler on so it goes on her yard. They don't like getting wet. However I too can see the news lines now....Ticked off LE patient strangles dog with big floppy arm for barking during nap time.
Cookie I think I would have to clobber that Dr. I have yet had any of my Dr.'s make a comment about my weight. Just wish they would send me to a nutritionist are something for help in loosing the excess weight.
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She did say she could tell I had been taking very good care of my LE arm.
My original tattoos were very faint and one day towards the end they used the wrong markings...then re-tattoed me.
I always wondered if that could have been at fault.
On a happy note, I went to the fitter today.
I ordered a beige Barton Carey glove and sleeve, a beige Juzo custom sleeve, and drumroll...the "fashion week" Barton-Carey black one piece.
(They used to have a picture up a woman who wore it to fashion week, which superficial girl that I am really actually made me feel better.)
I have to pay for some of it on my own, but it will be worth it to have some choices.
Have a great day all.
It's cool and cloudy and I am not in NYC on many weeknights so jumbo and I are going out on the town. The adventures of a woman and her swollen left breast...coming next season on HBO.
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You ladies are so funny...........The moron finally took the dog in the house...........thank heavens, .....................at least I won;t be seeing myself on the late news.........................
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Haven't been on this thread in a long time but reading all your recent posts lifted my spirits today. I'm sorry that you're all experiencing LE too but happy that you share your experiences. Thanks for the smile.
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Ducky--When I am wrapped and am around water I get an umbrella bag from Walmart or Target and put it on my arm-they are in the foyer when you enter to put wet umbrellas into). Works wonders. Plus if you clobber the barking dog the blood will be on the plastic and not your wrap!
Binney-So discouraging.
Becky
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