ALL THINGS Gloves and sleeves
Comments
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My issues are also in the hand/wrist/lower forearm. Right now I'm using custom elvarex, which is a heavier fabric, but has given me good control. I also made my glove extra long, it actually comes up about 14 cm. past my wrist where my sleeve ends. It may be too much compression for some, but it works for me! I always had that "gap" issue where I would swell around the wrist because neither the sleeve or the glove was providing constant compression. (And by the way, I'm still waiting for Solaris to come out with their daytime tribute garments... I'm always on the lookout for the next best thing.. What's life without hope for the future??)
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I have to say I am so in love with my Medahand gauntlet from BiaCare. The picture is very deceiving, it is actually very fat and round and quite cumbersome to wear, but holy cow, does it bring down the hand swelling. Like nothing I have tried, so much more than wrapping. I have been using it off and on for about 2 weeks now and the skin on the back of my hand is actually loose now, and I see veins! I was worried about using a guantlet style, but it doesn't seem to make my fingers swell at all.
So anyone with hand swelling that would like to find something that really works, I highly recommend it.
http://www.absolutemedical.net/products/default.aspx?itemId=386
My only drawback is what to wear it with. I have been wearing it with a daytime armsleeve (not to bed) and feel it would be better with some type of Jovipak or other brand arm sleeve that ends at the wrist. I wish I had before pictures of my hand, but I can tell you the skin was stretched and shiny and no veins or tendons could be seen.
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VIC
Would it be okay to wear that to bed with nothing on the arm whatsoever ?0 -
Do you think a person would be able to gauze wrap the fingers while wearing it? Also, how does itr compare with the solaris tribute hand? KS1
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It's odd that Biacare does not seem to have a night sleeve that is meant to be worn with the hand garment. At least on their website, I don't see anything without hand compression.
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I just sent Biacare an email question to ask if any of their night arm products is compatible with the Medahand, and I got a near-instant response:
'The MedaHand and the MedaGlove are both compatible MedaFit – ARM product. The MedaFit – ARM does not have an attached hand piece so that the patient may select the style & size that works best. We also make a ChipSleeve product that can be ordered sans the hand piece, so the MedaHand or MedaGlove could also be used with that.'
So, I don't know if it's possible to get a Tribute or a Jovi without hand coverage, but Bia makes them. From Victoria's supplier link, it looks like the Biacare chipsleeve is less expensive than what my Tribute cost, so I'll be keeping this in mind.
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Carol, Yes, I knew about the Medafit arm but that was more money than I was willing to spend. I went ahead and ordered a JoviPak sans hand. I hope they will work well together! It took every fiber of strength in my body not to order the purple color! But I choose the lightweight silk in black.
KS1, yes I think you could wrap your fingers. You would just have to be careful slipping it on. I was planning on doing that myself, when to my surprise it doesn't seem to push fluid that way. And I would say I'm slightly more towards the moderate end of the "mild to moderate" scale. So i was very surprised. Of course it might not be so for everyone. Although there is no finger channeling, my fingers are covered to almost the third joint, so they are getting some compression. I know awhile back I read someone here uses it over a glove for extra compression. Mine is pretty snug for that, but it's a thought.
Purple, it might be ok for you since you are so mild. Really hard to say. If it flows into your arm you need to get it up and out of there. But I have been wearing it at night watching TV with a sleeve and it seems ok. I wouldn't want to try sleeping in that combo.
I saw a lot of success wearing it while walking, but it got sweaty and I decided not to do that anymore unless I get a second one for that purpose.
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By the way, Purple, I'm so glad you started this thread a while back. It's incredibly helpful to read everyone's experiences with various sleeves, gloves, gauntlets, night garments, etc. Having one thread to look through when searching for an idea or to validate a concern is really great. And, if the garment makers are looking for ideas on what we need, what's challenging about using the various products, and what we find really works, so much the better for all concerned!
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Yes carol, I have been thinking the same thing about this thread, Just this morn I said to myself that I was going to post on how happy I was that Purple started the thread. You beat me to the punch.
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Thank you both so much!
I have learned an enormous amt from this thread myself thanks to all of YOU!
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Purple, some women here with just hand swelling find they can wear just the glove part on occasion. But the thing to keep in mind is that, even if it's just your hand or lower arm that's swollen, the actual damage to the lymph system is higher up, in the area of the axilla and chest. You don't want to push the swelling further up the arm unless it can actually return into circulation, up near your shoulder. So if you experiment with hand-only coverage, keep careful watch on your arm and axilla, and also on any rebound swelling in the hand that might be caused by fluid being moved, but not moved back into circulation.
Hope that makes sense!
Binney0 -
Thanks, Binney. I appreciate that.
NOTHING about LE makes sense to me actually. Sometimes it seems absolutely surreal!
But I trust you
so I wont be doing any experimenting, thank you .0 -
I had that problem with the custom made Jobst Elvarex sleeve and glove - the snagged, got runs, .... the material was soft, but not happy otherwise.
Purple I love "but the surf may well have taken me out to sea" that is so cute. And I saw that "most natural" someplace recently too. hmmmm wonder where it was.
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And I saw that "most natural" someplace recently too. hmmmm wonder where it was.
I've lost it, Linda - far far out to sea!
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Purple, I sure wasn't saying you shouldn't experiment! I'm all for experimenting--we do have to find out what works for us, and it may be very different from what works for someone else. I was just suggesting what to look for if you experiment in that direction, based on how the lymph system works and how ours got damaged. Always start with good control and try something (one thing at a time) when you're able to be watchful and not doing anything unusual. The stupid LE is "whack a mole," and we have to keep trying to stay one step ahead.
Onward!
Binney0 -
I am very confused. I was at the LE clinic on Jan. 24 and he measured me and ordered a new sleeve for me. I get a call today asking for credit card info for the sleeves. So I gave it to them, and they haven't even processed the order yet. How many middle men are involved in this. This is a company called Comfort and Care Products. And all they do is submit the order that my LE therapist submits? Seems crazy. And I am pretty hot that they've had it all this time and nothing has been done with it yet.
BTW, I use the Jobst elvarez and had no problems with runs or snags. Not sure if I was just lucky or what. But hopefully it will continue since I ordered the same one again. And the Jovipak per your recommendation Linda. I am really looking forward to getting it.
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After a couple of delays of two or more weeks between when my therapist measures me and the DME company orders the garment, I've learned to call the DME company a day or two after I see the therapist. I also ask the therapist for copies of the order so I can send it straight to the DME company if it gets lost between the therapist's hand and the DME orderer.
The DME I currently use (SunMed) requires that the copay be paid upfront before the garments are ordered. It's a bit unnerving to pay the copay for a garment that might not fit, but so far, they have been great about returns/remakes. The positive of paying the copay first is that, I know a garment hasn't been ordered if SunMed hasn't asked for their money.
A while back, someone asked how much custom sleeves & gloves cost. With respect to sleeves, I only know about the Juzo soft sleeve, since that's the only sleeve I have ordered more than once (I love it!). SunMed charges my insurance company about $110 for a custom beige, Juzo soft sleeve with silicon border, but when I paid out-of-pocket (i.e., NOT through insurance) about 8 months ago, SunMed only charged me about $90 . (On their website, they say that they have special prices for self pay clients.) About a year ago, BrightLife charged for $112.50 for an identical garment.
Last year I got a custom juzo expert silver sleeve with attached glove and pocket for swell spot. SunMed charged my insurance a whopping $900+.
I just ordered through SunMed a custom juzo expert glove (not silver, no bells or whistles) and a custom juzo soft sleeve. The total price was about $330, so that means the custom glove was about $220 when insurance is involved. KS1
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Purple, I sure wasn't saying you shouldn't experiment
Oh, I know Binney but all the trial and error just leaves too much room for error .
I may be better off going with the status quo. Thanks very much for your reply.0 -
After a couple of delays of two or more weeks between when my therapist measures me and the DME company orders the garment, I've learned to call the DME company a day or two after I see the therapist
Yup.Good thinking!
I went w/out a sleeve for severla weeks while my fitter sat on my order. I kept calling her and getting VM. She told me she tried me 3x. My call logs told a different story , which was a BIG turnoff. Finally, she said my sleeves were ordered. I contacted the complany who said they were not.The company was kind enough to call her and ask her to fax the order to them.
For that reason ALONE , I will never use this fitter again.
Not to mention the 2 failed custonm gloves.
You must have a good rapport with your team.
From now on, I will nicely ask the fitter WHEN they plan to submit my order. I will give them THREE extra days and then call and ask if they had a chance to submit yet. After that , I will follow up with the company. It's such a shame when we are (mis)treated this way.
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Purple, Sounds like you've got yourself a new part time job. Sherlock Holmes Investigator. I hope it leaves some time for you to post on the kick butt thread
When your done finding out where you sleeve order is could you find out where mine went?0 -
I had the same problem. The fitter is an adult, but most of the others at the DME seem to be about 18. They did not seem very interested in solving the issue of why my night sleeve had not been recd until I talked to the business manager. Magic!
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LindaKR: Hi thanks for the reply! I am inquirying about the custom sleeves because my insurance didn't cover the two sets of sleeves and gauntlets I got last year. They wouldn't even apply their cost towards my deductible. If I purchase custom compression garments then they will be covered. I have had new sleeves on order. I can't remember who makes them but I know they are backordered to France. Anyhow, will be interested in seeing how they fit since they are a one piece sleeve with gauntlet. Thanks for the information! Take care!
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Oh I'm done hugz...I went straight to the source - Lymphedivas ! Josh handled it for me.
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Purple. There you go again, Josh to the rescue. If he keeps us his good customer service he may well win the competition in the sleeve business. I am only hoping he gets more sizing and varieties. I know he listens but can't deliver our wishes overnight. I will wait with bated breath.
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I ordered a jobst Elvarex "comfort zone" custom sleeve and gauntlet. Wore it for a total of a week and threw in the towel on it...Let me tell you it was not comfortable and the silicone band left a welt on my upper arm. I sent it back and am not awaiting a Medivan custom sleeve and gauntlet. The jobst sleeve felt like a vice on me...hated it! Custom are not cheap, thankfully we have the ADP plan here in Ontario Canada that covers 75% of the cost...
Unfortunately I have to do custom for a year or two until I get my swelling under control, lymphdiva sleeves and gloves roll on me and offer very little compression for my upper arm:(
Michele
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Curly. eeks what an experience. I am glad you get 75 percent paid though, we get zip here in BC.Bet you can't wait to get into other more fashionable garments. Does Juzo do colored custom girls. I think they do, that would be an option.
Maybe I need to move to Ontario. 2nd thought.
...no. I hear your buried deep in snow right about now! NO SHOVELLING with your LE.0 -
Kay-G - I hope you like your JoviPak as much as I do. I also have the butterfly looking jovi for truncal LE, it for a unilateral MX and goes from my sternum to my spine, I wear it under a sports bra, you can wear it day or night. I've only worn it at night, it got my truncal under control almost immediately, and only have to wear it occasionally now, like when I had the d....m punch biopsies that triggered LE all over the place!
It's interesting when you take your jovipak off, it leaves channels marks (hard to describe, but you'll see them, because if you don't then it's not working) according to my LE T and the company this is the way it's directing your lymph to make the new paths. Boy, I can't say enough about my JoviPak items.
Enjoy!
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So Josh - if you're listening, please feel free to reply - when will Lymphedivas be making custom made sleeves, and one piece, because when you do, I'll be back on board!!!!
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Linda
Can you post a link to the truncal garment you are referring to ?
THX0 -
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