GRRRRRRRRR I HATE LE..........
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This the first time I do hate LE........UUUUUUUGGGGGG le hugs jinky
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Yes! Carol, I forgot to say thank you for that list!!!!
Sleeve Ninja, also Thank you.. I was looking on some sites and you couldn't return them if they didn't fit... bummer :P - Hopefully, the one you gave me is different.. I will check it out...
Helped hubby move his computer room around so we could fit an extra bed in there.. Family is coming... I tried to be careful...Hope I didn't overdue but breast and under the arm is bugging me a bit..
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OK so old health insurance paid 90% of LE gear
New insurance paid 287 freakin dollars out of 875!!!!
I am going to have to leave my fitter who I have been successful with to go out into the suburbs and try a place in network
CRAPOLA!
Sorry I am so not smiling tonight
Aetna rots
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Oh, Cookie, that does rot! We build these relationships with good therapists that are so hard to find, and then we have to start fresh . . explain your story again, give them an idea of how educated you are about LE, give them time to become familiar with your body, etc, etc. So annoying and a waste of time and money.
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Oh Cookie that is so unfair! We need an LE insurance company.
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Oh Cookie - that is what scares me the most.. If you all are having that much trouble with LE Insurance, what is it like for others without... Why does everything have to be so spendy!!!
My measurements do not line up to one size... for a off the shelf sleeve - does that mean I have to end up with a spendy custom??? I really don't want to go there..
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GmaF, I believe that does, but perhaps Binney or Kira can offer some guidance on sizing. Maybe different brands may be better for certain arms?
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Speaking of different brands for different arms, does anyone have a problem with the sleeves making their arms itch? I have Mediven sleeves and they are driving me crazy. I have hand washed them and machine washed them, used the liquid soap they gave me and my own mild detergent, I've hung them up to dry, I've put lots of lotion on my arms beforehand, but nothing seems to work. I know I'm hypersensitive, even a scratchy tag on the back of a shirt can turn me into a raving loon, but just wondered if some sleeves are softer than others? I still have to get my second pair and am wondering if I should try something other than Mediven.
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I am 1 cm. off - either on the wrist or the top of the arm.. which way is better?
Edit: So, I just found out I need a prescription for a 20-30 mmHG??? Great - one more hoop to jump through..
OK ladies I have definitely joined the GRRRRRRRRR I Hate LE club!!!!
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Gma, which way is "off"? I mean, is the sleeve bigger than the top of your arm, or smaller than the top of your arm? And where is your swelling? Total arm, hand only, lower arm, upper arm?
One thing we can say for sure: this GRRRRRRRRRR! thread is one-size-fits-all!
Binney0 -
Kate, bummer! If it's causing itching I'd sure try another brand. They all have differences in the fabric content, construction method, and containment factor, so one might be lots better for you than another.
Have you tried the Eucerin itch relief lotion? Might help....
GRRRRRRR!
Binney0 -
Kate--I have 3 sets of the Juzo dream sleeve and I love them. I have them in 20-30mg compression and my arm is not as bad a problem as my hand is. My glove is also Juzo but a 30-40 mg compression. The dream sleeve is soft and comfortable on the skin. If you can use them I highly recommend them.
Maggie
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Binney - its either too big at the wrist or to small on the upper arm...
Just got a call from my LE therapy office - they are going to send a request over to the surgeon and get a prescription for me and send it to our local (nice) med supply place.. they have someone that measures for sleeves and help me find one that will work... Anything I should know before I see her??? This place usually works with you and doesn't jack the prices sky high like the other hospital place does.
If I was to order a 20-30 online would they also need that prescription? Just don't want to be taken for a ridel.. if you know what I mean? I feel so lost with this whole thing - I'm glad I have you ladies to help me...
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Kate, I just ordered from Brightlifedirect ,Medieven flat knit and my arm which is sensitive itched in the inner elbow, If I am right... they put fine wool in that particular sleeve and come to think of it if I walk into a store with wool coats I sneeze right away. Maybe we are itchy because we are allergic. I sent it back.
I was hoping that the above listed off shelf sleeve would fit as I believe Medieven is the only flat knit ready made (cost effective, if you can get it to fit) and my MLD girl says flat knit is the way to go. I think she said it is because circular knit just contains your arm size but flat knit helps move the fluid.. Binney, Kira, anyone.. what is your thought about the knits?
GMA. Your sleeve has to fit exactly. You shouldn't be off a cm if you can help it. If you are too lose at the wrist you will pool in the wrist and if you are tight at the upper arm you will cause a tournique.
Google Birghtlifedirect, A lot of us girls use this online sleeve store. The fitters there are helpful. I find the prices the best so far. They are really cool about returning the item if it doesn't fit. I think you have 30 days to return but the item has to be washed and not beat up when returned. I usually wear it for a few hours and know if I love it or hate it. They have gloves/ gauntlets. wraps etc.
Oh I just looked at above posts and I see SleeveNinga told you about Brightlife. Excellent.
SleeveNinga. Haven't seen you post lately. How's life?
GMA, Let us know what your arm size is and we can compare notes. I'll admit my arm is like a man's shape
smaller and ending up 34 cm wide at the top with large shoulders. The Juzo 3512 that comes up over the shoulder with no arm band, works for me as I don't get binding around the large upper arm. A strap that wraps around my back and under my implant holds it.This type also is good if you have truncal issues as I find a arm band on me causes pain under the pit sometimes. I think it restricts the flow. The only things I hate about the strap is it has a adjustable steel buckle that grates me when I wear a tight shaper over as it presses it into my skin.(gotta sew a little velcro cover for that buckle but I hate sewing.) Also sometimes the strap slips up over my implant towards my neck (still works though) so I mostly wear a crew neck tee to hide that. I do also have banded sleeves, all Juzo 3512 variations too and use them on occasion.
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Gma. I see some off the girls have posted while I was writing my giant sized post. Isn't it nice that you are getting support from the girls? What team we are.
Be careful when you go to the store that the fitter is not just trying to make money and fits you into something uncomfortable. Ask about the return policy?
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hugs : all in cm.....
Palm=19.0cm, wrist=16.1, 8 cm proximal to the wrist =19.6, elbow=27cm, 8cm proximal to elbow=31.5,
16cm proximal to elbow = 36.3 (this is actually at the armpit) - 43cm from wrist to armpit
Edit: Binney let me rephrase that - If the upper arm fits the wrist is too big... If the wrist fits, the upper arm is to small.
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Gma it sounds like your arm is like mine. Starts small at the wrist and gets big at upper arm. Yes, my sleeve at the wrist would fit big in order to get the upper axilla arm measurement to fit. That is one reason why that the over the strap with shoulder Juzo 3512 fits me, as it accomadates the larger axilla area. Mine I beleive is 34 cm. I think my wrist is the same as yours but not sure. Don't have my measurements here at work. Be sure to ask to fit into the MAX size if you order Juzo. It is larger in the upper arm. Juzo comes in reg and long lenght too.
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Flat knit sleeves are no more therapeutic than circular knit - both provide compression & "containment" The difference, for the wearer, is a matter of fit & comfort -- totally individual. Most ready made sleeves are circular knit. Medi's flat knit is an exception. Custom sleeves are always flat knit. In theory, a custom sleeve fits perfectly -- but reality is another story. And once you get one that fits well, getting an identical one can be an adventure.
Compression sleeves are hardly the paradigms of precision engineering they pretend to be (or that would justify their prices.) I would try a sleeve if my measurements were a reasonably close but inexact match. Measurements vary. Measuring varies! It can take a lot of tries to find the "right" sleeve.
A prescription is needed only if vendor is billing insurance. You don't need one if you are ordering online/ out of insurance network/ out-of-pocket.0 -
got my custom Juzo glove today and man is it tight. Do they always feel like this in the beginning? Will have my therapist check it tomorrow but was just wondering if any of you got one that felt so snug at first. I have worn it for a couple of hours at a time and when I take it off it leaves marks on the skin. It is a class 2 so I know it will be snugger than what I am used to.
Maggie
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Maggie, for me new garments are always a sorta unpleasant surprise.
But it sure is possible it's too tight, so good that you can check it out tomorrow. Let us know what you discover,
Binney0 -
Binney- I've been using Cetaphil but will try the Eucerin. Thanks!
Mags20487- Thanks for the Juzo Dream recommendation. I'll ask about that one when I order my extra set.
hugz4u- I never thought to ask what the sleeves were made out of but if there's wool in there that would explain it. That stuff makes me itch like crazy!
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Cookie I feel for you because I now also have Aetna. My new fitter that has helped me get my foob and all my new garments is not in their network. The owner told me to call and talk with them. Make them realize I am hard to fit and I am a established patient there. She said they have had a few cases where Aetna allowed them to be in network. I haven't called yet but I plan on it. I figured I would wait to see what they say about my soon to be visit to the LE Clinic.
I saw the oncologist's NP today. I am so ready to tell this office off and ask to see a different Dr. I haven't seen my Dr. in almost two years and I go in every three months. I saw a different NP today. I have seen her once. I can't say whether I truly like her or not. She didn't think my leg LE had anything to do with all my treatments. I did find out why I have so many broken blood vessels in my scar area that come and go. Especially if I have my foob on for a long period of time. She said it was from the damage that radiation caused. She did ask if I was having any pain in my chest and arm since I was swollen today. I told her I actually did wake up today with pain in my chest. I assumed it was from wearing my new vest...which by the way I am not thrilled with it at all. I need to call and have it sent back. It is too big in the neck and pokes me all night long. I also don't think the over jacket fits right so I haven't even been wearing that.
Grrr is how I feel tonight too. Here I thought my leg and arm where better but my weigh in today says no.
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Kittydog...that is GENIUS.
The place I will go to next time does carry Juzo custom and Barton Carrey, so I am guessing, they almost could use my existing measurments. But it is a get the car, pay a toll, drive out of the city schelp.
Here is the worst...they pay 70% of what they think a sleeve should cost, not what it really cost.
I think they blew off the new belisse completely.
BLAH!
At least blue cross pays for post surgical bras even if you didn't have a mast.
If nothing else I will switch back to them next year.
I had a bad experience with Blue cross during rads, but aetna rots!
We still have a bit of money in our FSA, so hopefully they will reimburse.
Hugs to all thanks for the support.
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Kate -- I was told not to put on any lotion when wearing sleeve, as it will ruin the fabric. I just put on lotion before wrapping for the night.
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Maggie--My class 2 garments were always so tight at first. But I don't remember marks on my arm when I removed just a little red from pressure. I was always sure they were too tight but my therapist always said no. Plus they worked.
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Kareenie, hello!
What brand of garments are you using? There are some that don't handle lotions with lanolin in them, but my own brand (Gottfried) says I can use any lotion with them. It's so dry here I'd be in a world of hurt if I couldn't lotion before donning my gloves and sleeves!
I do put it on a few minutes before donning so it has a chance to "soak in," or whatever it does. Insect repellent is a different issue--some products shouldn't be worn under our sleeves. It's always something, isn't it?! Wish we could all take a vacation from the stupid LE!
Be well,
Binney0 -
Thanks all for the last postings about sleeves having wool in them!! I am highly allergic to wool!.... Boy, I'm not sure I like this at all!!! You all are scaring me.. I'm a really down this morning too - haven't heard back yet about my prescription - I doubt if my "insurance" will cover - I'm already close to my max of $1000 but maybe I will let them try. I wish I could just run away and hide from LE... Guess that's not going to work
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Hi Binney
That is just what my PT/CLT told me....You girls probably know more than she does.... I'm sure you know more than my fitter!My sleeve is a Juzo off-the-shelf 20-30 mm size II (Model 2001MX type CGR) with silicone band. Custom Juzo glove on order... let's hope it fits and works. We ordered a dorsum pocket and pad since hand/fingers are my main problem. Right now I am wearing sleeve and wrapping hand. KT also worked well on the hand but I have run out of insurance coverage for PT visits. (Grrr.. that's another story... you would think they would check how many visits are covered at the beginning. No; they didn't check until I had used up all my visits.
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Hello all....Well I thought i was having another flairup from the edema...WRONG...today i went to a new PT...wow so impressive.its like in a mini mall and everything has to do with PT,LE.This was in a new wing in a hospital in NJ.Anyway after 1 hr.evaluation,along with measuring both arms she claims i have a slight case for the beast.Yesterday a new lump popped up just above my breast bone #3.both elbows.and now this.Thurs.i will see the LANA specialist to start my therapy of 3x a week for 4 weeks.GOODBY JULY....I have no pain at all just afraid to do anything....I do have a list of questions for her but im soooo angry that 1 little bug bite did this to me.She did say i shoudnt have to wrap or wear a sleeve...does that sound right?and what do you do for the lump above the breast bone?I had a dopler US and the veins are ok.Thank GOD.
Another gift from this damn BC...I am beyond scared.Good thing i kept the compression bras from the edema...whats next?????2 yrs.out and still goin strong with issues...Grrrrrrrrr
I feel your pain.hugggggggs K
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OOOOO Granny... Hopefully, the bump is nothing... and so sorry you have joined us...but we can get through this together.... Love you! *HUGS*
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