ALL THINGS Gloves and sleeves
Comments
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Linda, what a lovely post! Wow!
You just brightened my day--thanks!
Binney0 -
Binney, YOU IS THE BEST! I am SO glad you and Purple have been here to help!
Just got back from the fitter, my custom Juzo was in, and I THINK it might be right this time!!! Hoping! Has been on for 3 hours and so far so good - keeping fingers crossed for the rest of the day. If so, she will order my second one so I have one to wear, one to wash. Finally feel like I am taking more steps forward than backward!0 -
Linda, your second to last post reminded me to make an appt with my fitter as I use Juzo and like you have had troubles sometimes with fit in the past. I'd been putting off ordering new sleeves so thank you for the reminder.
WONDERFUL that this time for your sleeve may be the charm. LOL, perhaps you've got Juzo straightened out so I won't have any problem. Hopefully you keep stepping forward!!
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Linda - glad to hear this! You've been through the LE mill!!!!
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CHOCOLATE EVERYONE, STEP UP! LYMPHEDIVAS GLOVES COMING OUT FIRST QUARTER IN THE NEW YEAR! YEAH!
Also left a message with Josh(Lymphedivas) requesting MAX sizes short sleeves. I would be their loyal customer if this was produced. Really hoping he calls me back. Anything you want me to ask him!
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Just heard back from Josh. He realizes that a lot of us need MAX size sleeve and as their business grows they will be adding this. I hope soon. I see a big market for this. It is the only reason I order JUZO and would happily leave JUZO in the dust for Josh's cool products.
Josh said the glove has been painful slow in development but it is coming along and we will have them. ( We all understand that Rome wasn't built in a day!) As I said the projected date for sometime newyear.
Josh will be reading our posts if you have any thoughts.
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Well, the custom Juzo is going back. I cannot tolerate the material on my skin, but the fit is almost OK.
I went to a local medical supply store today to actually touch and feel and try on a variety of sleeves. The ladies were quite nice, somewhat helpful, but ultimately, not much good came of it. I DID get a new Medi glove, a size larger, which feels MUCH better across the hand, fingers have just a little less compression, but I think that will be OK. I have an old model Jobst that has a long relaxed wrist that works OK with it, but the compression level is not quite enough for the whole arm. I tried the Juzo Soft 2001, which felt pretty good, NOT the material that my custom Juzo is made of. Unfortunately, the wrist was too tight and within 10 minutes there were deep marks where the glove and sleeve overlapped. I tried both compression I and II. Both felt OK at the elbow and upper arm, but not the wrist. *sigh* I also tried Medi and Sigvaris, same old story. **double sigh**
The Solidea is working fairly well for me, I don't like that across-the-back design, but the sleeve sure does stay in place. The elbow construction is particularly nice, and the wrist is almost spot-on, just mild excess compression that is tolerable for several hours a day.
My Solaris Tribute is back for revision. DH is gone this week, so I am bandaging myself at night - not pretty. They wanted a tracing of my hand so they could figure out where to "relax" the garment.
I asked several places about getting a CircAid Juxtafit, no one seems interested in measuring me or ordering one for me. The first bandaging alternative I tried was the Solaris Ready Wrap, but the velcro tabs were so wide that I couldn't get it to work to give me the graded compression; it looks like the CircAid has more tabs per length, so would give more flexibility for graded compression. Anyone have any experience with these? Also, when I tried the ReadyWrap, I had no good hand protection and the LE therapist I was seeing at the time was less than helpful on that.
I have been dealing with this since May. I still don't have good sleeve/glove combination. The fitters around here seem to only deal with Juzo for custom fit, and the material they use is so harsh that I cannot tolerate it. I wonder why my fitter didn't suggest using Juzo soft 2001? Maybe they don't make custom using that material?
I continue to be frustrated. I hate spending all my time searching for something that will not make things worse and that will give me back some independence and allow me to do things that make life worth living, like art, cooking, gardening, playing music. I would take any ONE of those things! Justs looking at my garden is not nearly as satisfying as being able to pull out a few weeds when I see them, rather than WAITING for someone else to pull them, meanwhile they get larger and uglier and more distracting. Yes, I know, this belongs on the Grrrr forum .... I just needed a little scream here. Thanks.0 -
Linda, I'm sending you a PM.
Binney0 -
Hi Linda-n3,
I am so sorry you continue to have trouble with this. It just absolutely stinks.
Juzo only uses their "soft" fabric for sleeves (and stockings) and not for gloves or glove+sleeve combos. As you know, Juzo soft sleeves can be made custom. Maybe you need to have the wrist of the sleeve (and glove) made extra large? Also, have you tried wearing the glove UNDER the sleeve? Some folks get less marks at the wrist when they do this.
Have you tried getting a Juzo glove in expert glove in the SILVER fabric? The fabric looks a bit strange (cup half empty: looks like chain mail; cup half full: a grey/gold sparkly thing), but I find it to be a little easier on the skin. They are very expensive: my custom opera length (finger tip to-elbow) glove was over $400, and my custom finger tip-to-axilla was over a 1,000!
If I recall correctly, your main problem is your hand and lower arm, right? Once you find a fabric that your skin can tolerate, if your problem is mainly your hand/lower arm, you might try an opera length glove. Opera length gloves are much easier to get on than fingertip-to-axilla glove/sleeve combo, they don't require a silicon band to stay up and they eliminate the double compression at the wrist problem. When I am just sitting around typing with arms relaxed and not dangling, I can wear an opera glove for several hours and my hand does fine. KS1
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Binney and KS1, thanks so much for the encouragement and suggestions. Will start calling again on Monday. Seems like a full-time job since May trying to get this stupid LE taken care of. But in reality, I truly have time to do some fun stuff, too, so it just sounds like I complain a lot (and I DO), but life is not ALL bad!
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Mostly I just lurk on this board, but do any of you wonderful ladies know of a sleeve that has a smoother finish and does not grab on to your clothing and refuse to let go? I have a Juzo soft sleeve right now. Since the weather here is getting cooler, I find that the sleeve just does not want to play nice with my clothing.
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hey Linda, I figure this is the one place that no one is critical of our complaints~
I am a little scared now as I have truncal LE but only minor swelling and do now wear a sleeve yet
Fri I slipped (never wear cotton pants that are too long and slippers~~), tripped on the steps and landed on my knee and left boobie
I iced the boobie right away and do not see any new swelling but worried, not much to do now worry about a flair
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my sleeve pinches my skin in my underarm area and is uncomfortable and it didn't do it until recently. i am thinking i am putting it on wrong. any suggestions?
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blackcat, what type and how old is your sleeve? Ive found Juzos can do this, well at least with mine which is a very "lightweight" sleeve for my prophy side. As they get older they tend to lose their elasticity and stretch easier.
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It is a Juzo sleeve and I got it in April of this year.
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I am wondering if I should be using a prophy sleeve as well. I did not have any nodes removed on that side, but have a lot of scarring from previous surgeries as well as the PMX. I never really thought about this before, but now with the dominant arm being so difficult to manage, am second-guessing myself all the time.
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Blackcat and all Girls, I have to brag. Eversince I got the slippie for donning, life has got easier! Well worth the price and your sleeve goes on so straight. After I use it I take my rubberglovve with the nobby's and run it up and all over my sleeve the get the compression even then I am done. Best part is you don't punch yourself in the face. Try it.
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LOL! I have punched myself in the face so many times!
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Blackcat, I'm pretty sure the sleeves only last 6 months. Maybe it has seen better days?
As for punching myself, gotta tell ya you seriously up your odds with a heavy grade jobst. LOL not too long ago I gave myself a fat bleeding lip
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Jeannie and blackcat. Punching ourselves while donning is an inaguration to the LE life
I fyou don't punch yourself you are not worthy of saying that you have LE. This pretty much covers everyone here on the threads!
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Linda is your dominant arm your BC side? I have suspected LE in my prophy (no nodes) non dominant side and have been wearing a sleeve on that after it had done it's dash taking the brunt of everything (BPs Sticks etc) Now its off limits and all BPs needles etc go in the leg/ foot. LE can happen on your prophy side. When they take that breast they can inadvertantly take a few (minor?) nodes because of the nature of the surgery.
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Musical, yes, my dominant side is the BC side, so the left arm has been taking the brunt of everything, as you said. I may start using a sleeve at least when I am working out or working hard, but I am pretty miserable in general trying to get a sleeve that I can tolerate even for a few hours for the LE side ... *sigh* .... no good options here.
New experiment today: Solidea sleeve with Medi95 glove, sleeve OVER glove instead of glove on top - still had some hand swelling, but not nearly as bad as with the Juzo combo. I also tried Juzo sleeve over glove yesterday, didn't help. I took photos of how swollen my hand was, the marks on the wrist, the redness irritation of the thumb and little finger to show the fitter. Maybe that will help her help me better.0 -
Linda, My medi esprit glove is always tight in the fingertips so I put big fat markers in them and allow them to dry that way. What a difference the fingers tips don't swell like when they were tight fitting.
I am wondering if your medi glove will have too much compression compared to the Solidea which is a light compression. Do you have a lighter compression glove than 30/40 compression.0 -
Linda, I got the custom Juzo, expert, one piece, with glove and have been very happy. I found an amazing fitter that worked with me. Besides the wrist issues, my thumb joint is basically gone, so if there is too much compression it causes more pain and swelling. So my fitter measured a little loosed around the thumb and wrist and it worked great. She is in Portland, Oregon, I may have told you that before. It was worth driving 200 miles each easy to get a good fit.0 -
I am very late to the party, but just wanted to say thank you to hugz4u for the heads up on Lymphedivas gloves! Can't wait to get out of the media I currently wear, and hope they work well for me...If they need beta testers, I would be more than happy to do so!0 -
Hildy. No problem. That is why we are such swell people here. What goes around comes around and I am sure you will be able to give us some cool ideas soon. You know we just gotta stick together here,
I figure I am a lifer on these threads. They are so supportive. Only us LE'r really understand each other.0 -
So I totally understand that I have to wear a sleeve (no hand piece thank goodness) However, the one that I have is hideous! I hate to be so superficial and I'm not a slave to fashion by any means but, all I can say is BLA! I want something that is comfortable and not so darn scratchy and that doesn't scream out "look at me!!" So I am doing some shopping around and before I buy I need some opinions...The Dream Sleeve? Lymphedediva? These are kind of fun. Solidea? they have a cool funky look but, not a lot of color choices. My swelling is mostly in my upper arm, the sleeve I have now (Juzo) seems to pinch and irritate my arm at the top and I get a red mark under my arm. It looks like the Solidea one might not be so irritating. Anyone tried any of these?? I don't wear anything at night...my therapist say it's not necessary....but, should I be?? HELP!0 -
Tishfin, I am using Solidea sleeves with good results for the most part. The "slimming sleeve" has the waffle weave thing that is pretty comfortable, comes only as a bilateral, so both arms get a sleeve. It is really comfortable, but does not provide class 1 compression, it is just below that (about 15-20). So if your LE is minimal, it might work for you. I use it when I am not being very active, like going out for dinner or church. I have the champagne color, and it looks OK under long sleeves or short sleeves, and if you get cold easily, like in air conditioning, they are nice for an extra layer. BUT if you get hot flashes or are hot-natured, they are a little warm.
The next higher compression of Solidea is listed as class 2 compression, but it is actually class 1 (about 20-30). It has one sleeve and one partial sleeve, which is what holds it in place. This might work well for you if you have problems with upper arms and those silicon bands with other sleeves. These are very gentle in this area, don't seem to pinch, and don't slide down as it goes across the back and is anchored by the partial sleeve on the other side. Unfortunately, that partial sleeve is longer than most of my t-shirt sleeves, so it shows. The material is relatively soft on sensitive skin, the wrist is a little tight for me and I still get a little hand swelling where it overlaps with my glove, but it is fairly mild and resolves fairly easily.
If you have mild LE, grade 1, you may not need anything at night. I have been noncompliant a few nights when I just emotionally could NOT wrap or use my Solaris Tribute, and I did notice a little extra swelling in the morning, but it wasn't horrible, I did extra MLD, got over myself, and it didn't do permanent harm. That being said, some people have significant swelling if they don't use some protection at night.
I just got my Tribute back for the 3rd time, and I think the revisions are going to work! I was having so much pain in my hand as it was compressing across my metacarpal/phalangeal joints, where the fingers attach to the hand. It felt like it was crushing the bones across that part of the hand. So initially, they released the finger portion, put a velcro patch there, but it did not help the hand crunch. So next they put another velcro patch from the base of the fingers to the wrist, and it is working pretty well. I get a little hand swelling, so am using the very soft silky expensive Farrow Light glove AND a liner stocking that I use for bandaging, and it helped with skin sensitivity and hand swelling. I am tolerating it pretty well now. The only major complaint I have is the stench - the materials they use to make this garment have an old rubber smell. Ugh. DH says I am imagining things, but he cannot smell lots of things that I can. (He says I have the nose of a dog, LOL).
LindaKR, I may see if my fitter can get me a one-piece like yours once we have figured out the material. I cannot use the Expert - it irritates my skin so much, I had petechiae and little bruises on my arm from wearing it! No other sleeve that I have tried has done that, and I tried it 3 times, so I am very certain that is the cause. I went to a large medical supply place and tried on every OTS sleeve they had, found that the Juzo soft 2001 was tolerable, and they said Juzo can use that for custom sleeves, so I am waiting for an appointment with my fitter to see if she will work with me on that. She had suggested early on that a one-piece might be a good option for me. I would come see your fitter, 200 miles would be worth it, but unfortunately it is about 2500 miles for me to get there ....
Hugz4u, I am using Medi95 glove that is a size larger than I had previously ordered, and it is great! The wrist is better, the hand is better, and the fingers are fine. I have tried the sleeve over glove technique that someone suggested, and that is working better. My PT/LE therapist saw me this morning for the last time and thinks I am doing a great job. She considers it an advanced grade 1, still probably reversible, although it has never gotten even close to the size of my other arm, and no fibrosis, so I am continuing to be as compliant as I can be with MLD and exercises, and am becoming a little more optimistic overall. Thanks again to all of you who have been so helpful!0 -
Linda-n3 you deserve a medal for all the effort you are putting in. I hope this all works out very soon and you get something that is great for your needs! I think it's a great idea photographing "issues" too. Ive done this with various disasterous lumps and bumps at my fail efforts at wrapping. It helps to show LEist what we're dealing with. LOL if I sent my "not the best fitting" sleeve back for alterations, by the time it came back would almost be time to get another one. In the meantime what does one do? Either wrap or use old "past their use by date" sleeves.
Strangely for me at the moment my arm goes down at night if I have nothing on. My LEist says Im Stage2. Ladies, what are your thoughts on that. Should I always be wrapping/wearing a night garment?0 -
Musical, the point of treatment is WHAT WORKS for YOU. I swell at night, but many women don't, and if you're among them then there's no sense in using night garments. On the other hand, LE is a sneaky little dickens, so keep an eye on things and if you start to find swelling in the morning, it's time to wrap or use a night garment at night. Also, if you're traveling, if you overdid it with your arm during the day, or if you're super busy and haven't got time to pay attention to your arm, then using night garments or wrapping at night will help head of new problems until things calm down again.
When I first went through LE treatment I couldn't sort out for myself what worked and what didn't . It takes time, and we can only "experiment" when things are in good control to start with. But with time and care you can find what you can get away with and what you can't.
Be well!
Binney0
