GRRRRRRRRR I HATE LE..........
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ok. I'm just posting to vent a little.
My arm has been hurting...swelling because of the heat, I think, so I've been trying to be faithful about wearing my sleeves everyday. I just got my new sleeves in, which had to be custom made, and they are driving me crazy! I don't remember the other ones bothering me so much. Maybe it's just the heat, but I want to tear them off by lunch time. The other thing is, these expensive custom made sleeves all snagged within two weeks. you'd think that for what they cost they could make them a little sturdier!!!
ok. I'm done.
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hiswell sisters..just wanted to let you know; im lurking, pretty much. Having trouble they found a mass in my thyroid, which explains all the symptomsive had... 9 drs. later, and who knows how many tests, NOW they figure it out....
so, its surgery for me soon.. not soon enough for me, believe me!!!
i also, am a wrap girl.. i find it works better for my hand/ arm than any thing else. i do have sleeve, and custom gloves, but by the end of the day; i can't wait to wrap.. it does take patience, but it pays off BIG...
when all gets sorted out; i need new gloves. they must;ve thrown them out at the onco's office. never found them! glad i had the spare gottfreid's. they help the most; i lost my "active" ones, which were jobst... i so dreading the process. have to find a new fitter, again..what a giant PIA!!!
keep on keepin on!!!3jays
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3jays--good luck with the thyroid.
I'm a firm believer in wrapping as well--it can be a royal pain, but it sure does work.
Leapfrog--those sleeves sound miserable. Can you have the fitter check the fit? I know about snagging--I dread velcro....I love your avatar.
You know how Laura wrote about women whose LE wanes with time, well, I saw a patient yesterday, and that's how the chart read--LE at the start of treatment and it resolved over time, and I physically checked her out, and her arm was quite swollen--a 5 cm difference, and here I thought I'd found another remission....But, she had very little understanding of LE and wouldn't take a script for a new sleeve/glove, and had no understanding of care. But, I was really disappointed at the people in my practice who've been seeing her for years and writing " no evidence of LE"--I don't think this just popped up....
I DO think that those of us who take care of our LE can push it down a stage or two.
Kira
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3jays--hope you get the thyroid problem solved. Bummer the gloves were never found.
Leapfrog--My first sleeve was a little off on the fit and I was uncomfortable at end of day. It was made by Jobst. They let me keep wearing it while they remade a new one. It needed to be just a cm longer. What a difference! I could keep it on day and night if I had to. It did not cost any extra. My therapist used them because they will redo. I do worry about my glove getting a little ratty over time. And snags. Hasn't happened yet as it has only been four weeks but I see it coming!
Kira-I had a friend visit me yesterday who is a 7 yr survivor. She developed LE and was wrapped for four weeks and wore a sleeve for a few months only. She said her arm bothers her at times and she swells but she feels she no longer has LE. She said she just puts on her sleeve for a day or two. I could even see it was slightly swollen. Go figure. A case of denial.
Off to do my Lebed exercises! Becky
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Kira - she checked them when they first came in....and she measured me extensively and then remeasured so I don't know. I'm hoping after a wash them a couple of times they'll relax.
Becky - I just changed insurance so I'm not sure how that would work, in terms of trying to return them for another pair....mine are Juzo. I think the next time I'll try the Jobst.
thanks for the input!
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Has anyone used an Allegro sleeve. I saw a gauntlet/sleeve combo made by them that would be great, if it works and it was about $45
here's the website:
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hey guys, Binney told me about a product .. i found it joanns for like $3.00 its called "fray" check, something like that. i put it on the seams, and they do MUCH better. if i don't have it right, Binney knows the right name for it...night........3jays
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3jays............ let us know about your thyroid.... I hope it is nothing ~
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When brightlife first began carrying the allegro sleeve back in Jan 2011, they sent me a class 1 in small to comment on. I never wore it because it was too big. It's possible that they have redesigned it (can't check because I donated it to a LE clinic on the thought that it might work for someone else). But here are the comments I sent to brightlife in winter 2011 with a few ADDITIONAL COMMENTS I didn't send to brightlife.
1. The fabric is quite nice. It's a bit softer and smoother than the juzo soft and clearly nicer than the off the shelf or custom jobst class 1 or 2 sleeves. Because the sleeve's fabric is smoother, clothing doesn't cling to it as much, so clothing drapes better. {ADDITIONAL COMMENT: the allegro doesn't seem to be as stretchy as the juzo soft]
2. For me, the small sleeve is much too long and somewhat too loose, especially at the wrist. [ADDITIONAL COMMENT: for comparison, the juzo soft 2001 "off the shelf" regular top with silicon beads, regular length, extra small size (1) fits me reasonable well, though I still need a custom to accommodate a few arm oddities.]
3. I don't like that the knit changes at the wrist to a ribbed knit.4. It's hard for me to say whether the sleeve would stay up because it is too long and loose. I personally like a silicon band, which this doesn't have. On the other hand, there are times when a silicon band can irritate (hot days, swimming). It would be nice to have the option of a silicon dot band (like juzo has).
To me, one of the real selling points of this sleeve is its affordability. For women who pay out of pocket, this matters. It would be nice to have an inexpensive sleeve that one didn't have to worry about for swimming or doing messy jobs like gardening.
- KS1
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Missed the FED-X truck yesterday...........needed to sign for my sleeve................its a custom, and need to take it to my LE specialist to find out how to get it on easily...............The place I went to did not accept Aetna, which I did not know till I got there........................they had a woman on staff who does nothing but measure, so I decided to get the sleeve even if I had to pay out of pocket, which I did.
I came home, called Aetna, and pleaded my case to them...........how most places on their approved list do not sell sleeves...............do not have a person to measure.................puts the responsibility of measuring on my LE person..............and are exactly 29.15 miles from my home which is just under the requirement for going out of network.
I got a phone call today from the place I bought the sleeve from, and they told me my Aetna Case Mgr. called them today, and said they will pay for 2 sleeves, and also a "nightime sleeve"................the woman said to me "I guess its true what they say about the squeaky wheel"........"they are paying for everything", and we are not on their list...............
I have a terrific Case Mgr. and she went to bat for me with the Medical Director, and he ok'd me getting it from the place I went to (which was recommended by my LE person).............now all I have to do is wait for the Fed-x guy to come today.
I am a happy person......................Ladies I am only saying this because don't take "no" for an answer when it come to your insurance company.............Plead your case, research and go back and tell them what you find out..................ask for a supervisor....................don't just let them tell you "no".........................even if it doesn't turn out "your way", its worth the fight because 2 times they ok's things for me when they were not in their network.....................I was also told insurance "won't pay for your bandages"...........I called, questioned why, and again after a little back and forth , they paid for 2 sets of bandages...................never take no for an answser, until you have tried............just a little info.
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Hi Just wondering what is a nightime sleeve? I I am just learning about LE. I am just showing signs of it and want to do the right thing. Trying to get app. with PT. SharonH
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Sharon...........my LE specialist is Board Certified..................she is excellent, and my RO told me to get someone Board Certified............she is the only one in my whole area, and I had to fight to get her too........she was also not in network with Aetna..
A night sleeve is one that you use instead of the compression garment you wear during the day..........It looks entirely different from your day sleeve..............go online, google ......night sleeve for LE", and you will see one.
good luck, just remember..............get someone good............a person who does not know what they are doing, can do more harm then good...........hugs.
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Hi Ducky. Thanks for the info. The one I have picked out is a Certified LE Therapist Sure wish it did not take so long to get approved to go see her. SharonH
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It took me a couple weeks from when the "discussion" began, until they approved my LE person, but in the end I won my point..............she is great..........in the beginning I saw her 2 times a week, now I am down to 1 day a week................
Glad you got someone board certified......they are hard to come by.........mine wouldn't even take the responsibility of measureing me, although she said she could, but wanted the person responsible for ordering my sleeve to have to measure me.........she said if there was any problem they would be the one fighting with the company to rectify any errors.............that is how I got to go to someone out of network.........she had a lot of influence on Aetna when they spoke to my Case Mgr.
good luck with your treatment............mine is minor caught early (no thanks to anyone but me), so I was lucky................
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Hi, Sharon, and welcome!
I'm so sorry about the LE diagnosis, but glad you found us. Here's information about therapists -- there really is no board certification for lymphedema, though there is an organization called LANA that therapists can voluntarily join by passing a written test. Any board certified PT or OT can treat lymphedema, unfortunately, with no specific training at all. So here's a page that might help you understand what to look for:
http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm
The night garments are very different, as Ducky points out. They're made by Solaris Tribute, JoviPac, TelestoMedtech or The Reid Sleeve People. Another type is made by CircAid or Farrow. Here's a page of garment companies you can check out:
http://www.stepup-speakout.org/Lymphedema_garments.htm
More about what to expect from treatment here:
http://www.stepup-speakout.org/treatments_for_lymphedema.htmThis is all a steep learning curve; tell us how we can help!
Be well,
Binney0 -
I do believe LANA does offer a program which takes LE therapy to another level................I was warned that all PT, and OT are not qualified to take care of LE................My specialist works right in the Hemotology/Oncology Dept of the hospital where I had surgery.....................She does not do any PT or OT at all..............She only does LE patients..................She can do PT, and OT, but she doesn't..............there is a group that does that, but they do not do LE.
I'm sure there are those out there who can do LE without taking the LANA certification, but this is what my RO, MO, and BS told me to do................she was not covered by Aetna, but because my Dr.'s wanted me to go to someone who did just LE, Aetna approved me to go to her.................Glad I did.........she is excellent, and my LE is really improving..........after only 5 weeks she got my arm down 8 %, and I'm going into a sleeve already, but it will be custom made.................different dimensions in my arm made it impossible to wear an over the counter garment.............Aetna is paying for 2 custom sleeves, and a night sleeve too.., and that was because my LE person said that is what I required.........hope you do well.
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Ducky - your one line really struck me when you said "mine is minor caught early (no thanks to anyone but me), so I was lucky................" A whole bunch of us can say the same thing, and that's the crux of the matter. What about all the other women who don't find this thread or don't do research? Too many of them aren't dx with LE until it's in the later stages, because their doctors certainly don't help - at best women get no guidance, and at worst they are given incorrect info by their doctors, e.g., when they tell women with SNB that they are at no increased risk for LE.
I get so angry sometimes - why are we left to learn about this by ourselves? What about those of us who are not lucky enough or internet savvy enough to research it and learn for ourselves? Don't misunderstand - I have gotten excellent surgical and oncological care - but every one on my medical team dropped the ball on LE - surgeons, oncologists, NPs, PAs, nurses, PCP, even my gyn is clueless about LE. B/C is not rare, nor is LE. Yet I find that I am the one educating my doctors all about LE - what's wrong with that picture????????? AARRGGGHHHH!
:::stepping down from soapbox now:::::
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Sharon--Sorry you are joining us! You will find so much information here. It is what got me on the right track. Otherwise I would be lost.
Hey Duckyb--I can't wait to see what you think of your new sleeve! I love mine. I mean if I HAVE to have one. Interesting on how therapists work differently. Mine measures me and sends to a fitter. The garment(s) come back to her and she helps me learn how to don them. She even gives them all of my insurance info and they take care of it. I have a lot of loose skin on my upper arm due to high weight loss. She even called jovipak to explain and they had her send pictures and measurements while lying down. I am so happy I don't have to deal with another person!
Nats-Amen to your soapbox stand. We all need to stand together!
Melanie--A few days ago you said you were comfortable in your wrapping. I never really liked it but came to terms with it. I was beginning to think I was going to be wrapped in my coffin! I wonder if some are wrapped too tightly. How are you doing?
Binney--Saw the SUSO. I love my butterfly!!! The prettiest one. Panama had the most beautiful butterflies in the world. I am a butterfly person. I am in Dolly Parton country and she has a butterfly made out of flowers at the entrance to Dollywood.
Becky
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Natsfan, hear hear!
Ducky, let me clarify. I agree with you that LANA certification offers us at least the assurance that a therapist has taken 135+ hours of specifically LE training, and that's a very good thing. But LANA is not a "board certification" because there is no review board overseeing the actual practice of LE therapy. In other words, when we've run across LANA-certified therapists who have abandoned the therapy practices they were trained in and are doing actual harm to their patients, there is no LANA provision for handling patient complaints. In fact, those therapists can maintain their LANA certification despite any number of howling patients. LANA will not act on our behalf even to review and, if necessary, cancel their LANA status.
If we have problems with a LE therapist, the LANA folks tell us we're supposed to take it to our local OT or PT certifying board. This is a flawed alternative, because there's certainly no guarantee that any of those board members hearing our case will have any grasp of LE protocol at all. So again, if you have to appeal to a PT or OT board about mistreatment by a LE therapist, it's up to YOU to educate that board about what the therapist SHOULD be doing. It's a problem I've faced in my own community, and I've communicated with the LANA administrators about it -- they have no plans whatsoever to hold their LANA-certified therapists responsible. Which makes me crazy!
So, okay, I'm stepping down from that soapbox too!
Sure is a busy spot today!Hugs, Ducky -- I'm so incredibly pleased that your therapist is a good-un'!
Binney0 -
Becky, can I post a link to your butterfly here? It's a great read!
Binney
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Binney4................Yes I am fortunate..........she is really good, but I understand what your saying, and your right..............if Lana is going to educate these LE people, then they should be willing to "back up" what they proclaim..............certainly not fair..........I guess my thought was it is a little more comforting to know the person you ;have working with you and on your LE is a little more savy then the average PT................as I said mine is very good, and LE is all she does.........
Becky................My LE specialist could have done all you said too ...........the reason she didn't was she wanted to make sure that the person who did the measuring was also the person who did the ordering, and was in a good relationship with the people making the garment...........it was a kind of a "just in case" thing.....................in the event the fit was not just right...........she said the manufacturer would deal better with the measurer, and orderer, then dealing with just her..................however she will be the one showing me how to put this thing on, and I will let you know how it goes...............must admit even th;ough I am called the "poster child" for being able to bandage.............it is a pain in the ass...............waiting for the damn FEd-x guy to come back with my sleeve...........missed him yesterday, and he 'is suppose to return [today............not here yet, and its almost 5pm in Pa.
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Becky..................a footnote................I too have a bigger upper arm......thus the need for custom sleeves...................after wrapping I have this piece of flab that I can't get inside the bandage spilling out over the back-side of my arm.........................honestly it looks like a Quasimoto hump that grew on my arm instead of my back................yet my LE person can get it all in...............go figure....................
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Binney--Yes you can post a link.
ducky--I have a piece of flab too I could not reach. I had to constantly have help with my first sleeve in getting it out and over. My therapist or my 89 yr old mother who lives with me had to help me every day. I hated the dependence. My therapist had jobst remake the sleeve with one more cm. Now I can do it alone. I never had that trouble with wrapping. Hope your sleeve is long enough. Keep your arm down when putting it on. Putting your arm up in the air moves the loose skin that direction. Hope this isn't TMI everyone!
Becky
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Thanks!
Here's Becky's beautiful butterfly -- and her wonderful personal LE story. http://www.stepup-speakout.org/Story%202.htm
Brava, Becky!
Binney0 -
Becky- Ok..I didn't mean I was exactly comfortable in my wrapping. I just meant that it makes my arm more comfortable. It decreases any pain that I have from the swelling when I'm not wearing it. And that makes me look forward to wrapping. I am sick of it though. I've been doing it for about 13-14 weeks now. I will say though, that I wasn't quite as good of a patient as you. Sometimes I leave mine off for 3-5 hours a day. I just feel like I don't have enough time to do the MLD and re-wrap. I could actually probably be fit for a sleeve and be just fine but I refuse to stop trying to get the last little bit of swelling out. I want my arm to look exactly as it did before. And my therapist hasn't even recommended that I wear the wrappings 23/7. I learned that here!
So I'm very thankful for all of the information here. I feel like I have a better grasp on how to handle it myself. And not having to depend fully on a therapist is nice. Even though I feel like they have our best interst at heart, if they don't take the time to really understand how our LE responds to treatment or doesn't, then I think it's up to us to figure it out. Yes, it's frustrating, but it's reality. I'm sure it's exhausting as a practitioner to have many different patients, all with the same problem, but with many and sometime unknown triggers.
What a complicated condition!?!?!? So thanks everyone for your hard work in putting info together and getting it out to us!
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you go get'em duckster!
Interesting visit to the fitter today.
I met one lady with a ton and I mean a ton of Kineseo tape on.My impression was she was doing this as an active phase treatment while she waits for garments. She says it's been effective for her.
There was another lady who when she saw my arm shouted out..."Why is your arm smaller than mine.." Like somehow she got ripped off. I felt bad for her.
I sent back one of my BC sleeves....who ever said they are stiff described it well. LOVE the gloves tho.
Have a great weekend all!
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Hi. Thanks for all the info. I will be doing some research on everything. I am not really sure if I have LE or not. If I do it is in the early stages. My upper arm hurts more than before and my chest wall and shoulder ache more, So I want to look into it. I will read all your posts again see what questions I have.Thanks for taking the time to welcome me. SharonH
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SPOKE TOO SOON........................
S$%T....... SH&^..............S&I%,,,,,,,,,,,,,,,,,,, SHI^ SH%T
115 heat here
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Laura!
(there aren't words...)Gentle hugs,
Binney0 -
Thanks Binney...... there are not words for any of us......... just this...........
GRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRR!
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