ALL THINGS Gloves and sleeves
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what is dme?
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Durable Medical Equipment
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A round of gooey, warm brownies on me!! I just received a new set of custom day garments (Juzo soft sleeve, Juzo expert glove). Some of the fingers of the glove are a bit snug and long, but it fits! If that weren't enough to elicit a happy dance, my insurance covered it even though it is my 3rd set in 3 months (5th set in 5 months).
So in 12 months, I had 8 custom Juzo expert gloves: 3 fit perfectly, 1 was a tad loose overall (but acceptable), 1 was a tad snug and long in the fingers (but acceptable), and in 3 gloves one of the fingers was completely wrong, for an overall success rate of 63%.
The 3 that were completely wrong I returned, and in each case, Juzo admitted there was a manufacturing problem. The first time, it took them a month to admit the problem, the 2nd time less than a week, and the third time less than a day. I think the trick is to semd a short letter outlining the problem, and also to send photos of the mismade garment (with ID tag clearly visible) AND comparison photos of a correctly fitting garment (with ID tag). Perhaps also important is that, when garments DO fit, I always let my DME rep and Juzo rep know and thank them for their help.
I have got to say, for me, one of the most discouraging and depressing parts about LE has been the hunt for THE glove. I can't count the number of times I have expectantly waited for a glove, hopeful that it would be the one that would make my hand LE manageable, only to try it on and discover it was mismade, mismeasured, or just not right for me.
It took me 4 years and many many attempts with 9 or 10 different makes of gloves, but I think I have finally gotten a glove that fits like a glove. I am so very very grateful for the folks on this board who gave me encouragement, advice and moral support that I needed to keep trying. To the folks reading this thread who are struggling to find the garments (especially gloves!), don't give up!
KS1
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Do most people wear a glove?
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I only wear a gauntlet Bhd1 - But my LE is in the Trunk and upper arms - Only at times do I resort to a glove and then I use isotoner therapeutic gloves.
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Do most people wear a gauntlet?
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Carol just a thought... are you familiar with voice recognition SW. Are the programs you are using able to integrate with it? It might be something to consider especially if its text based apps. Give those poor mitts a rest or at least partially.
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Barb : if you have swelling in hand you should wear a glove. If no swelling in hand you should wear a gauntlet. If you are wearing a sleeve you should be wearing one or the other. See Step Up Speak Out website a wonderful resource for more info.
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kareenie thx for the info. i will read
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Carol, I mouse with my left hand. (Is "mouse" a verb now?!) But then I also type with my left hand, on a left-hand-only keypad called a FrogPad. I don't recommend learning left-hand-only typing (back to typing 101!
) unless you absolutely must, but learning to use a mouse left-handed wasn't a big deal. Just a thought.Barb, here's a short article about why it's important to use hand protection when you're wearing a sleeve. The same actually applies to wrapping, but it's not unheard of for a therapist to "experiment" with using the least amount of wrapping possible and resort to hand wrapping only as needed. Trouble is, it's often eventually needed!
http://www.lymphedivas.com/handprotection.aspSteep learning curve, yes?
You're doing great--keep up the great work!KS, OH, HAPPY DAY!!! Your perseverence is an inspiration. (And so are your gooey warm brownies!
)
Binney0 -
Binney, I hope this wretched (well, it's actually very interesting) work overload ends before I have to teach my left hand any new tricks!
I had a strange experience with the hands today. I got out a gauntlet and put it on my left, LE hand, on autopilot. Then shook my head as I realized I had intended to put that one on my right, over-moused hand. And when I put it on my right hand, it felt noticeably looser than it had felt a second before, on my LE arm. I have no swelling in my hand, at least that I can detect, and all my LE aches are in my upper arm and around my elbow. So now I'm wondering if I can feel added lymph that I cannot see and should consider moving to a glove from the gauntlet. If I go to see my local CLT, she will measure but find nothing and send me home, so it's a DIY question. Do we suspect that the feel of the gauntlet could be an accurate signal of subtle swelling?
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Hear yee all:
Lymphedivas at brightlifedirect.com is offering patterned sleeves 3 for 169. I would love this sale except I need max sizes. My dream would be small short max. I hope Josh is reading
.Carol, I don't have overly noticeable swelling(unless my glove is too tight) on my LE hand but I wear a glove daily. My LEist says that I can try a gauntlet late in the day but to start off with a glove. I think that is because she wants me to control the invisible swelling for the first part of the day when we are the smallest measurements whereas if you put the gauntlet on first then the glove later your hand may be more swollen. I know this doesn't anwer your question it probably just confused you.
So this is what I do. Wear a glove daily but if I feel rebellious then I put the gauntlet on for social occassions if its after 4pm or so. My Leist says that I only need to wear my sleeve with hand protection for 8-10 hours. I usually have it on for 10 with hand control too. I always start the LE gear wearing in the morning when have the littlest swell to maintain that size for the day. So my LEist and I are experimenting.
If you have no pain and no visible swelling then a gauntlet may still be your choice. I realize you want to be proactive but sometimes we can even go into overkill if we are not careful. Ive done that before with my truncal.
Oh I hope the experts come on and weigh in.
I am trying the rollerball mouse today and I really like it. Even before LE, my hands would always have problems if I am typing too much. When that happens I usually have to back off the keyboard for a few weeks to repair the soft tissue damage.
I never play computer games as that wears out my hands quickly. Instead I save my hands for these threads and for surfing. I really have to be choosey with my keyboard activities.
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Carol, I'd sure experiment around with that. Try the gauntlet on both hands at different times of the day. Maybe keep some notes so you can put the pieces together more easily. As Hugz so aptly points out, different times of day can really affect swelling. That's what you want to figure out.
Just a thought,Binney
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Oh that sale ends today eastern time:(
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Thank you for great suggestions, ladies. I had an a-ha moment this morning regarding the LE hand. The past few days, all the keyboarding has been brutal on my arm, so I decided to face reality and wear sleeve/gauntlet every waking hour, plus my Tribute while sleeping, so 24-hour compression. Usually I wear day compression only when I'm active. This morning as I was typing, my wedding rings were bugging the heck out of me, because they were too loose and the stone was sliding between my fingers. I took them off, and then it hit me: first time in memory that the rings were loose, except when frigid cold last winter! I have lost about fifteen pounds since last summer, so by rights the rings should be a bit loose, and I think I now know that I do indeed have some swelling in the hand, which I apparently can control using steady compression. So my hunch on the different feel of the gauntlet--looser on the non-LE hand--may be correct. Now I just need to do some experimenting and note taking, as Binney suggests, to see if there's a time-of-day influence I'm not accounting for.
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Carol, Wow your just a little bit of Sherlock Holmes aren't you? Glad it is coming together for you. Hum... a olymphic event "finding the right thing that works" set to a time limit.
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Carol I admire your determination.
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Barb, I don't know if it's determination , or resigned to my fate!
Hugz, the event should be called the Timed Trial and Error Trot.
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Carol. Love that event name. It rings in as so true.
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Linda, I had to go to a custom, Juzo, one-piece, sleeve with glove, the fitter measured loosely at the wrist, it works great. Big but though, my old insurance paid for them at about $700 each, now I'm on medicare and they don't cover compression garments :-(
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Linda, that makes me think of another Olymphics event: the Compression Cost Relay Race. Each runner races to her bank, and on arrival passes a compression sleeve to the next runner, who sprints with it to her own bank. The race goes until every runner's bank account is empty.
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Carol, I love that event as well! Yes, this does get into some major $$$.
Got my new custom Juzo golve & sleeve. Glove still painful at thumb, the seam is right over a bony prominence of the joint and causes blistering, but overall the glove seems pretty good. It is CCL-1 rather than 2 because the fitter said my hand is so small that the 2 becomes too tight because there is so little material to work with. Or something like that. I will probably keep it and just use a bandaid over the joint. Otherwise the fingers are perfect and the wrist compression is fine.
The sleeve is another story. They relaxed the wrist, so it is almost just fine, just a little circumferential line around after a couple hours, and hand was swollen even with the glove. The material is horrible. It felt like a knife cutting into my inner elbow with any motion. It is rough on my skin, felt like a sunburn going on and coming off and all the time in between. I thought it might just take a little getting used to, so wore it for 4 hours. Unable to bend arm without cutting pain, so left arm dangling. Sort of defeats the purpose, doesn't it? So I think the sleeve is going back. I am hesitant to even have the fitter order a flat-knit, even with the softer material because the sample felt just horrible - it didn't seem like it was very breathable, more like a hot rubber sleeve. I had mini-meltdown over the sleeve issue again. I just cannot get my head around the idea that I have to wear torture garments the rest of my life. I hate tight clothing, have never worn tight clothing, and this just can't be happening to me.
I started with a new LE therapist, and we agreed to do the true intensive DCT for 3 weeks, which we did not actually do before. I only saw a therapist twice a week rather than 5, was alternating between wrapping and they started me on the garment wild goose chase only 2 weeks into therapy, so was trying garments, night garments, alternating with bandaging.... no good exercise plan in place ... so this time, the new therapist will work with me to be very aggressive for 3 weeks and then see where we are, and I have agreed to complying with this regimen. I know some of you have bandaged for over 8 months and have had great success stories, and I just want to give my body the best chance of improving. The main issue seems to be that we can get the hand swelling down but not forearm and arm, which must mean fluid is not getting past blockage, which could be due to poor MLD technique, inadequate clearing of core to give fluid a place to go, or, more ominously, local/regional invasion of more lymph channels and/or vessels, in which case I won't be able to expect much improvement. The MO says the tumor has not increased in size and no new ones found on exam, so I am hoping I can just be more compliant with doing MLD properly, exercising properly, bandaging properly, and trying not to lose hope.
BTW, we sent my Tribute back for them to release the hand compartment - they said they would put a velcro tab on it so that I can put more or less pressure on the hand as needed; the rest of the garment felt fine. Since I am bandaging all day right now, they can have it to do the alterations.
Also, I compared the material used in the Juzo CCL2 sleeve with the CCL1 that I had before - it's like night and day. Also, the Mediven95 has a much softer feel and I can tolerate it even though there is a little bit of a pinch at the inner elbow. I used the Mediven95 combined sleeve/gauntlet with a Mediven95 glove while I was on vacation and found it tolerable for going out for dinner. I was told that double compressionon the thumb was not a good thing - so far all gloves and gauntlets have caused irritation on the thumb joint so I just put a good bandaid over it and tugged at the thumb every 10 minutes or so to relieve the irritation (which then caused flare-up of my CIPN with lots of tingling and pain in left fingers) and I don't think I did any damage, and in fact, double compression over the hand was probably good. The fitter I have gone to only uses Juzo, but she suggested Jobst might be a better match for my skin issues.
Well, I was a step ahead of her on that, had ordered Jobst Bella Strong from BrightLife, and had to return them. The material is also horrible, rough, and the wrist is too tight. I had a CCL1 Jobst, not sure what model that was great except not much compression on arm.
So, dealing with new LE therapist, starting from the beginning with CDT. Also considering low level laser therapy (cold laser). Has anyone had this done???? And there may be nothing that will help if the tumors are causing excessive obstruction.
Current situation on sleeves: multiple trial & error, have tricky wrist that exacerbates hand & finger swelling, sensitive skin to many of the materials, very tender inner elbow, and complete intolerance for tight clothes.
I have moments of hope interspersed with moments of fear, anxiety, crying a lot, still struggling to be active as possible. And am committed to fully complying with what is "gold standard" therapy for 3 weeks. After that, I don't know the future, so won't waste much more time worrying about it, but I AM trying to plan for the best options for sleeves when this phase ends.0 -
Linda I have considered the CLT - Cold Lasar therapy - I was referred to a Chiropractor who was a nurse before she was a chiropractor. We had a phone conference about the breast pain that is hiding from the US and Mammo - She suggested CLT - I haven't called her back to make an appt. I keep on thinking its another fad.. My other Chiropractor used it for a bit in the beginning of my pain and then I never saw him use it again - said something about it not working. I don't know if this helps or not but there is my 2 cents worth.
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Apologies for typos ... Using a tablet to type this ...
Lindan3. What type of juzo sleeve did you get? I had a regular juzo expert sleeve/glove combo. It chafed at the elbow way too much to wear for more than a couple of hours. I thrn got a juzo expert silver glove/sleeve combo. Therapist had them add an elbow dart. the juzo expert silver was a lot better. Best of all is the juzo soft sleeve. Haven't had any problem with chafing. juzo soft is kind ofvlike the material of opaque tights, only thicker. problem is they don't make a juzo soft sleeve/glove combo so you would have to wear with seoarate glove and deal with double compression at the wrist.
Wrt the thumb abrasion .... Initially, I had a lot of problems, but no longer do. I have them measure the fingers really long so they cover about 3/4 of my finger nail. This seems to help a lot. Or maybe my skin just toughened. Used tegaderm to protect skin without adding bulk of bandaid back when I had problems.
Wrt cold laser, I had a lot of thick cords, adhesions and scar tissue that therapist used LLLT on. It seemed to work to help release and break it up. Can't say whether it worked on LE per se, but it gave me more mobility at shoulder and wrist and movement is good for LE.0 -
My recent replacement sleeve on my BC side is a custom Jobst. I was measured by a person who specializes in this field and it was decided that I would benefit from "heavier grade" material. I don't know whether it is the strongest (I think it is) but it's almost like wrestling with canvas especially when it was new. I simply COULD NOT get this sleeve on myself. I love the feeling of the extra support but the problem is it does not seem to be keeping the swelling at bay below the elbow. That is, I have (sometimes) actually noticed more swelling when I take it off from when I put it on. Is this somewhat normal or is that indicative that this sleeve is a wrong fit.
Theres another thing Im thinking about. I hear some of you refer to "compression sensitivity" and how it can cause rebound swelling. How would one know if they fall into this category? What symptoms do you experience? Id really appreciate anyones experience on this.0 -
Musical, if you're swelling more when you wear your sleeve than before you put it on, that's a good sign the fit is wrong. Too tight above the elbow, maybe, so it's pushing fluid lower?
Bummer, at any rate.My therapist pointed out that I was compression sensitive because when she wrapped normally my arm didn't get better. She tried a gentler wrap and it took the swelling right down. But I've had to do a lot of trial and error to figure out how in the world to cope with this. Heavier fabric garments turn my fingertips unhealthy colors (white, red, blue--cold!), even if the fit is loose. Experimenting around with this gets expensive fast
, but once you hit on a strategy that works for you it's so much easier to maintain control. As for wrapping, if I'm in too much of hurry, or if I'm feeling panicky about a flare and sorta desperate to get the swelling down, I tend to wrap too tight--and then I have to start over and do it right.
Just on a side note, it seems to me from the women who've found that "less is more" with compression are most often of a slight build, which makes sense in terms of the physics of compressing a cylinder (which is what our arms are).
I hope others will chime in, as this is a subject that's not often discussed, or even acknowledged.
Hugs,
Binney0 -
Musical, like Binney said, if you swell more with higher compression or get better when you back off, that is a good sign you are dealing with compression sensitivity. I also have that.
Still having problems getting a good garment - hope my new custom Juzo is in soon. Gloves doing great for fingers, but hand and forearm still swelling like crazy.
Am trying a new brand from Italy, suggested by my LE therapist - Solidea. Will let you know how it works.0 -
Thanks Binney and Linda for your comments. Well I've never spoken to my LEist about returns so it looks like theres a first time. I take it they alter these rather than give you a straight out new garment? IF they do this and return it, how long would I expect to wait? I'm picking something like a month, no? Also this garment has been causing a VERY red mark on the inside at the elbow area. I know this is a pretty common complaint but this is quite bothersome by the end of the day. Ive been wearing it just over a month. Shouldnt be doing that now.
Anyway if this happens, I can see me making real good use of the time by :
a/ getting into wrapping again ... LOL just the catalyst I need.
b/ See if I get much joy out of my 1 month old OTS juzo which I wear on my prophy side. You never know.
Im also dealing with my Jobst glove (for the 2nd time) where there is a little hard notch right at the base between my 2 middle fingers. The last glove had 2 of these notches and my new one has one (so far). Essentially they dig in and by the end of the day the area is very sore causing me to take the garment off. As such, Im pulling from my various "backup bunch" (lol) Has anyone else had these little contemptuous notches develop? Im thinking its maybe just the shape of my fingers causing it because we looked carefully at the new glove before I donned it and it definitely didn't appear to have any doubled up sewing or anything.
When I told the measurer about these notches he told me if this happens again to let him know, so my LEist already knows and it looks like I'll be seeing him in a month or so again.
Also in the meantime I have been lent a "sample" Juxtafit which I have to return in a week. It is just to "play around" with. It's waaaaay too long but Im just trying it on to get the concept of how it works. Any caveats about this garment anyone? Anyone tried it and loved it? When my LEist tried it on me very briefly at the end of appt before last, I was STUNNED that in just a few minutes it had taken the swelling down below my elbow!!!
Binney, one thing I have heaps of confidence in is my LEist certainly knows how to wrap. The trial and error for my LEist and I has been to watch my fingers. The one time I thought it MAY have been just a tad tight at the top, (because my fingers were getting redder) and she thought so too, so she loosened it off just a tad and a couple of hours later it was all baggy and had to be redone, so she had it right the first time. Ive found initially when she wraps, my fingers definitely go more red but she told me when you push your finger if the red doesn't return reasonably soon then get it off, or if the fingers go blue. The initial redness which I consider OK disappears pretty soon, like generally between 10mins to a 1/2 hour.
I guess this is all just part of that learning curve we all have to do as individuals.
Linda Ive just this minute taken my glove off because my finger ends are swelling a little and Im using an old gauntlet I was given just to try and told not to bother returning. I've found its comfy and doing a better job around the swelling of my hand just below the wrist. I hope the garment you are waiting for is the right one so you can get your swelling down too!
Awww Soorrrry for the long winded post.0 -
Binney - I kind of chuckled when you said you've found women who have said "less is more", are of slight build. Less is more with my LE does work for me after much trial and error as I swell with too tight or too much compression. But I don't fit that slight-build mold. I've always been a 1X /2X plus size with not huge arms, but larger arms.
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Ladies, I have FINALLY discovered an OTS sleeve that seems to work for me, by Solidea. My LE therapist suggested I try them, and I got both the "slimming sleeve" which is bilateral, a kind of waffle weave/knit that is very soft and non-irritating, but it is not technically medical grade compression, but according to the therapist would be acceptable for me. It has a very relaxed wrist, and seems OK for very light day, such as going to church or out to eat in air conditioning. It IS a bit warm. The other sleeve is a compression class 1 that has full sleeve plus 1/4 sleeve on the other side. This works well to keep the full sleeve from sliding down the arm as there is no silicon band or other way to keep it stay put. In any case, the wrist is relaxed enough that I can use a Mediven95 glove with it!!!!!! I wore it all day yesterday and it maintained the swelling, did not create deep or constricting creases around the wrist where the glove and sleeve overlapped, and it has a little different construction at the inner elbow which makes it much more comfortable than any other sleeve I have tried (with the exception of Jobst).
So this is what I have that works for me after over 4 months of trial and error. The custom Juzo garments are still not here - have been returned twice so far. The Tribute night garment is still useless as it causes such horrible hand pain I rip it off after about 2 hours, so have just gone back to bandaging at night or using nothing, depending on my mood and how the arm is feeling by the end of the day, how much I have abused it, how hot it is, etc. I had returned the Tribute once, they relaxed the "hand" but in reality they really just relaxed the finger portion. The fitter had instructed them to relax across the hand, so it is going back today and I am sure it will be weeks to get it back.
I still don't like this LE stuff, don't like the hours a day it takes to care for the arm, don't like the bandaging and garments, don't like pantyhose on legs OR arms .... but I am finally able to get back to some artwork. Still not cooking, chopping vegetables or gardening much, but I DID make pickles over Labor Day with help from my mom and sis. So life goes on, pretty sucky on some issues, but I am finding moments of beauty, love, peace, and gratitude each day. And I am VERY grateful to those of you on this thread who have been so helpful and supportive during one of the most trying times of this whole miserable BC journey. Without the misery, how would I know the love and compassion of so many many wonderful women across the world???0
