GRRRRRRRRR I HATE LE..........
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Becky, I'd like to see the website. Let us know how the wrapping goes. I saw my LE therapist yesterday, and both she and Steve Norton have recently reinforced to me how crucial it is that patients know how to wrap themselves--it's a powerful tool in our toolbox.
And JO---your experience is very, very important--I may spout medical facts, but that's just what I do...It's my effort to try and make sense of all of this
And, Binney sells herself short in the housekeeping department: sometimes I watch "horders" when I I exercise, and think "Well, I'm not quite there yet..."
Kira
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Kira,
I am giving the site, but a few minutes ago I could not get it to work. If it doesn't I will send you the article I saved privately as it has some pictures of fairly advanced breast edema. The taping of the breast is on page 38. It is from a British journal on LE.
www.lymphoedema-uk.com/journal/0101
Yes I do want the wrapping ability to be in my toolbox. I WILL master it!
Binney--I guess I will break out the bubbles and tap the inner child in me. I lived in Panama for 23 yrs and had a maid--so my housekeeping skills became defunct. I really miss her.
Becky
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Becky, I logged into the Journal of Lymphology from the UK--I did find a recent photo of kinesio tape from taping and seroma--was that the photo you referred to, it's on a page 15?
It's a tough journal to copy from.
Kira
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Kira,
I just sent you a PM with the citation. It is Journal of Lymphoedema. Page 38. See PM.
Becky
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Becky, I got it, now can we figure out how to share it--thanks for the reference.
Kira
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Hi becky could you please send me the article too . I wrap very regularly. I have also just purchased a caressa to wrap over and it is brilliant. Not so much fuss with the wrapping , I can do it myself and it softens my arm so much.
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kerrie, what is a caressa? not something im familiar with... 3jays
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3jaysmom, it's a caresia foam bandage liner by Solaris: Binney and I saw them at the vendor show, and told the CEO how much people like them--almost more than they like their Tributes, it seems.
http://www.solarismed.com/caresia.php
Kerrie, the article that Becky has is from Lymphology--a British Journal, from 2006, on breast and truncal lymphedema. Normally you need a subscription to see their articles, but sometimes they're on the web.
I couldn't find the pdf on the web for free.
Here's their home page:
Kira
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Hello-I read all 36 pages of this thread.Thank you Binney for introducing me to it.What an eye opener.Tomorrow I will call all my drs. and start looking for a therapist.
Im just overwhelmed with all this info and im really pissed off at all these drs.IF I DO HAVE IT.Im still not sure yet.Or am I in denial??????
I see so many sistas from other threads...why didnt i pay closer attention?
Just love this thread and the wonderful support all you girls bring to this table.God bless each and every one of you.huggggggggggs K
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granydukes, the imp thing is, yer gonna get it looked at NOW!! my drs. poo poo ed me too, but Binney got to me early, and its' been under control from almost the first!!! better to start taking care of it right away...
KIRA: thanks for the links.. 3jays
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Thanks for the links - one of the most frustrating things is not having a way to measure a baseline for truncal LE - the only way I can measure is by my pain level and visual swelling of axial and back of axial. Lacking any breasts, it is quite easy to see the swelling, but no one yet has offered any real way to measure it. Guess it doesn't matter if I can see it and feel it. Does the Lebed DVD teach MLD for truncal LE? I think I do it too hard and too fast.
I would also love to learn to kinesio tape it for swell days. Don't know if anyone around DFW TX knows how. There's not anything on the Kinesio tape site. I wonder if my LE therapist would be willing to experiment. Anyone other than Becky ever try it? I know a local PT that does injury taping - I know she doesn't know anything about LE taping. Maybe I can get the two of then together, since they work at the same hospital.
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Kira thanks for that.
I'll have to start reading!
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Kerrie--I tried to send the article to Kira but it won't go through bc.org. I found the article by googling "kinesio taping of the breast". It showed under www.lymphormation.org and another time under www.lymphoedema-uk.com. The article name is Breast and Trunk Oedema After Treatment for Breast Cancer by Anne Williams. It is the Journal of Lymphoedema, 2006, Vol 1, No 1. The taping of the breast is on page 38. I had two strips to cover all swelling on my trunk. I have tried to send things here but to no avail. I have saved the article. If you want to privately send me your email I will see if that will go through. Suzybelle sent me the pics of taping of arm to my email. Question: Does the Caresia work as well as traditional compression. Can you get it as snug?
Bookart-My therapist says she has taped the breast on some over time. Some are afraid of it and on some the skin is too sensitive. I was wary at first but I have had such relief.
Grannydukes--I too thought I was just imagining I had LE but asked for a referral anyway. I was surprised to find I was in Stage 1. I have been wrapped for four weeks now and am beginning to see it back to Stage 0. So do follow up.
Kira & Binney--I wrapped successfully yesterday! The tension felt about the same as my therapist. It gave me such a feeling of freedom to be able to do so. Now I can redo it on weekends after the 8 hours Binney recommends. Today I find out if I am ready to be measured for a compression sleeve. I am not going to get my hopes up though. Plus it means decisions on which company to go with, getting the dr. to give me the prescription for my insurance, etc. Kira, thanks for the exercises. They are similar to mine but there are some additional ones I will do. Now off to therapy early and off to teach classes.
Becky
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Good morning---I started early as I was wired this morning.Called the BS who was in surgery but spoke to NP who I do like.She is sending me a referal in the mail along with a list of DRs. she recom.Im going away tomorrow till afterEaster.massaging gently and doin the exercises you sistas posted.and no salt.By the time I get back I should be ready to go.Im gonna do this thanks to all of you.Sistas helping sistas.Thank you especially the girls who started this thread.Your support is wonderful.I will keep you posted and help as much as I can.Thanks for post on the after rads thread.THIS I DID NOT KNOW.
and last but not least I HATE CANCER.I PRAY FOR A CURE/VACINE EVERY DAY.AND I DO BELIEVE IN MIRACLES.
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Granny,
So sorry you're having to deal with this. You are one of my fave posters - always sassy and to the point!!!!
Hang in there and let us know how you're doing. I have to say, bc has given me a lot of really sucky things to deal with, but one of the perks are these awesome women in this forum. I can't do without 'em.
S.
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congratulations, becky.. your learning curve just went WAY UP!!3jays 0 -
Thanks suzybelle---im just so thankful to the sistas here.from the day i came to bco they have guided me every step of the way...and it was not pretty.so...im gonna deal with this like i did every thing else.everything about this damn monster is a nightmare....I pray every day for a cure/vacine.I even posted it on my facebook.i started working on it already.i feel good today.AWARE...sistas helping sistas.God bless all of you.huggggggggs K0
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Hi Becky,
Yes Suzybell sent me some photos too that are very good and i will have a look at that reference you suggested .. thanks for that.
The caressa is a bit different because it has like foam chips in segments throughout the sleeve. These apparently help distribute lymph flow and work on some difficult swelling spots by softening them from the pressures of the foam.
I find it very good. Much more comfortable as well. Fits snuggly and i apply 1 layer of bandaging over it instead of the 2 and thats it. Very easy!
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Becky, brava!!!
It's more than just a feeling of freedom, it IS freedom! These are the tools we need to manage the rest of our lives without having to keep a therapist in our pocket.
Way to go!As for the Caresia (and the Solaris or JoviPak night garments), most therapists are purists who believe the gold standard is wrapping with short-stretch over foam. But most therapists don't have to wrap their own arms every night either. So we all have to decide what compromises we'll make in order to live our lives with joy and still keep the LE at bay. For those whose LE is in the hand, none of the alternatives are as good as the standard hand-and-finger wrap. But these other products may work for a break from that from time to time. It's always trial and error.
On the kinesio taping, just a word of caution to everyone. This is definitely not a do-it-yourself project, much less a one-pattern-fits-all. We do need guidance from our therapists on this one, though certainly with their help we can learn self-application fairly quickly. Please don't anyone experiment without professional help.
Becky, waiting for good news on the garment order -- let us know!
Hugs all around,
Binney0 -
Hi All, Bummer. My elbow area was .5 cm higher than Friday so more time in wraps. Oh well. As I wrapped last night--everything with me in my bed--I thought of those of you who have to do BOTH arms. It really humbled me. I also have a 23 yr old nephew with Cystic Fibrosis who has had to do treatments all of his life, many hospitalizations, now a port put in forever, insulin, and facing a permanent feeding tube. He would often beg to skip treatments and we were hard line..I need to call him to hard line me when I don't want to do MLD, exercises, more wrapping. And among all of his setbacks he will graduate from college in two weeks. Even more humbling for me.
About the kinesio on breast--I agree with Binney. Don't do it yourself at first. I wore a patch of tape my therapist put on first to see if I was allergic. Plus the square goes over the swelling which was hard for me to see exactly. So I let her do it. Plus I am not sure how permanent it will be. I am not sure if I want to be taped all of the time. We are also discussing a compression bra. But the immediate relief has been great. I took it off yesterday and still have relief. My therapist did say it does not help some people.
Wow! What I have learned since March 22 when I found out I had LE. I am still not ready for a test yet!! I will say most of my knowledge has come from you ladies and this site than anywhere else. Thank you all!
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Kinesio tape worked so well for my trunc LE, but I am allergic to it and have skin rash after a few days. It is the same with surgical tape (surgical glue is okay)
Somebody here mentioned being coated wtih Pepto Bismal to help? Does anybody know why this helps?? I have a bottle, and I have rolls of the tape. I wonder if I should try it on a small spot experimentally?
I learned how to prep the Kenisio tape and my husband was shown how to apply it to me. You're right, I would not have been able to do that myself!!!
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The Pepto Bismal - helps the Kinesio Tape stick better and longer on the skin. Most therapists after placing the Kinesio Tap on and the " arms fan " down towards the end.... they will take another short piece about an inch wide and place it over the end pieces that was just placed on your skin to prevent those ' fans' from rolling back or becoming unstuck.
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Pepto Bismol is an "old wives" (and old nurses!) treatment to sooth minor burns. It protects the skin like it does your tummy if you take it for what it's marketed for. To use it on your skin, apply it liberally with a cotton ball and allow it to dry before applying the tape. And, yes -- definitely test it out first on an area without lymphedema so you don't create a rash or open raw wound in a vulnerable spot.
There are other skin prep products that some women here use as well.Binney
Edited to add -- good grief, no! Not PB -- I meant Milk of Magnesia!
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My head is spinning round and round.I just cannot take all this in all at once.its like starting from the beg.flashbacks like crazy.
im so glad im leavin tomorrow to see my GD and great grandson for Easter.Gotta digest this while im waiting for the script for the therapy...
OH THE JOY OF BC.IT SURE DOES SUK.
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grannydukes--Have a great time with your family.0
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Granny, there's a HUGE learning curve associated with LE. I've been dealing with it for over a year now, and it's only been in the last couple of months that I feel like I have a handle on it all.
Hang in there...and you are in the right place - this forum is the BEST place for info. about LE and how to treat it. I take the suggestions I get here to my LE therapist and onco!!!!! And it's free! How cool is that????
Please, please hang in there - it gets so much easier, I promise. Have a great time with the family!0 -
Thanks for the info on Pepto Bismal!! Who knew!!! will try a "test" spot...
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weather question: the last couple of weeks we've had temperature fluctuations of 30-40 degrees. We've had severe weather (hail, tornado warnings) ... does LE act/feel like arthritis? A day or two out from a big storm my shoulder hurts, my underarm hurts ... and then the next day ... bam, a hail storm. Does anyone else experience this? I had severe arthritis years ago in my knees because of running and my knees were great predictors of the weather ... better than any weather person. Is LE like that too? I hurt really bad yesterday and guess what ... tornado watches out today! Does anyone know how/why that happens?
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Springtime - I have never used Pepto B. as a barrier, but milk of magnesia works really well for me. It's very messy, though. I generally just buy the barrier stuff from Bandages Plus.
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Good grief, yes -- it's Milk of Magnesia, not Pepto Bismol. SORRY!
The white stuff, not the pink one. Haven't tried PB either, but the MoM works well. Geesh! Blank brain...I don't use kinesio tape anymore because even with the MoM I worry about my adhesive-sensitive skin, and just don't need the stress.
D-H, yes, I'm really good at predicting the weather.
I believe it has to do with barometric pressure, which has the same effect on our LE as changing altitude (for the same reasons.) Those storms have been horrific -- stay safe!
Binney0
