ALL THINGS Gloves and sleeves
Comments
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Thanks, Carol. Still one question -- can it be adjusted easily for different amounts of swelling? Is the adjustment variable or in fixed steps? The sizing chart sounds like it accommodates edema fluctuations.
I gave up wrapping yesterday; after three tries (each take me about an hour) couldn't get it to feel right. The complete system you are using would have helped. I am also considering the Caresia system that you still have to wrap over; have to find out if that is also day AND night use, and whether it can be used for variable amounts of edema. With wrapping, it's the stupid superlon foam roll sheets that drive me the most crazy, can't get them on without foldy bumps without putting some tension, and I think that's what's been making the whole wrap too tight. The all-in-one unit would be easiest, but I could live with still needing the short-stretch layer.
Complicated. Headache all day, not using anything tonight, hoping I can rescue my hand/arm by daytime wrapping tomorrow.
Sorry so many questions, but very very grateful for all answers and support
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Tessu, I think the Ready Wrap is suited for swelling fluctuations. The adjustments are via flaps that you secure with velcro, and on my arm, the amount of adjustment for each flap seems to be at least a half inch in each direction. The flap with the least adjustment for me is at the top, nearest the axilla, and I could adjust the others by about 3/4 to 1 inch in each direction (looser and tighter).
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Carol, with the ready wrap, how do you get even compression. I would be afraid that I would velcro it up too loose or too tight in the wrong areas. I am curious about this product.
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The product guidelines say to snug them up, but there should be room to insert two fingers under each flap. I took that to mean two fingers side by side, not on top of each other. I think there are some videos on youtube that show how to put it on. I'm squeezed for time at the moment so can't look and link for you.0
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Thx, yes I would do two fingers side by side that is what my LEist does when she checks up at the top of the arm after occasionally wrapping me. Its ok I can you tube it, thx for my curiosity fix.
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I made a mistake yet again. I got so absorbed in a pc project, I was sitting in the same position using my wrapped LE right arm/ hand for the mouse for 3 hours (!) --- didn't notice the time or any discomfort (typical of me). I unwrapped and my hand and fingers are swollen and using them they feel too stiff
I thought using a wrapped limb was ok But obviously not ok to be down at your side for that long So I showered, did MLD (the right abbreviation for self massage?), and will keep myself awake for another hour so I can elevate my arm and fist/unfist my hand. Not going to wrap tonight; I don't trust my skills. And what Carol said above about 2 fingers should fit easily beneath the wrap -- ????
LE, the gift that never stops giving. My bad habit of becoming so absorbed I don't notice body signals is no longer just stupid, it's now dangerous
I will hopefull remember to ser an alarm from now on. hope the swelling goes down a bit by morning; too afraid to wrap overnight anymore 0 -
Is it safe to just Vodder wrap the hand for sleep? If you're too tired to battle the foam strips for the arm
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Tessu--please know that while the Vodder system uses foam, there are other systems of wrapping that do not. The best system for you may be the one you can live with. Instead of the foam, the other system(s) uses a cotton wrapping under the bandages to protect the arm. That said, my PT made some "sleeves" out of the foam so that I didn't have the struggle with it each time I wrapped. I don't quite know how to explain it, but she took the two pieces of foam (above and below elbow) and taped each one into the cylindrical shape needed to cover that part of the arm. Then she covered each with stockinette and taped that as well. I just slip one one up over my elbow and the other one under the elbow and start wrapping. I've got to try to make some more for myself.0
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Why should I be surprised that the compression vest my hospital physiacl therapist ordered for me is WAY too small, when everything else she has given me has also been the wrong size? Sent an email directly to the company aaking if I can edchange directly, or do I have to go through that #£¥*$! PT again, groan....
But: I did sleep ok last night, and have been wrapped for 2 1/2 hrs so far this afternoon.
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just wanted to share that I just got an email that lymphedivas gloves are finally available for order November 2! I usually am a one piece custom glove to axilla kinda girl
, but i may have to try one to see if this would work for me for an occasional alternative? 0 -
mary625: Sounds like you have a practical and helpful PT. Would you mind posting a couple photos of her creation? Maybe I can make myself something similar. Thanks
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I have a question for all of you experienced ladies. I have been wearing custom one-piece sleeves with attached glove, I need it because every two piece I tried caused excessive swelling on each side of my wrist and I need the fingers because gauntlets caused more finger swelling - when I got the custom sleeves I was covered by private insurance that paid for them, now I'm on medicare, which does not cover any compression garments - the cost of them was about $700 ea for the sleeves, and they should be replaced every 6 months, I've made the 5 I got last, but I really need to replace them soon, and that cost is prohibitive. Do any of you have the same type of swelling problem around your hand, wrist & fingers, and have you found an of the shelf solution? I'm going to try to learn the kineso-taping, which helps me a lot, but not the same as a sleeve.... Any ideas, or ways to get my custom sleeves at a discount would be wonderful - I'm currently wearing Juzo.
Thanks, Linda
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Tessu ( and others), as I happens, I tried my hand at making the "foam sleeves" today. Here's the process, starting with foam that your PT has already cut to fit your arm. I do not know how to fit or cut the foam. The idea here is that you are creating a tube out of stockinette in which the foam will be encompassed. The stockinette will be stretched enough to accommodate the full circumference of the foam but still have enough tension to keep it from being too loose.
1. Cut a piece of stockinette about twice the length of your arm.
2. Pull it up to the armpit, leaving the rest (about 1/2) dangling off your hand.
3. Put the foam around your arm over the stockinette already on your arm.
4. Gather the dangling part and start to do with it what you'd do with a long sock you want to put on.
5. Pull that part up and over the foam until it is covered. Do not worry about the foam getting out of its correct shape or not being in place at this point.
6. Once you have the foam within the tube of the stockinette, take it off your arm gently and start to work with stretching the stockinette to get the foam into place so that the two foam pieces meet gently and form the appropriate shape for your arm.
7. Cut a second piece of stockinette and repeat for an extra layer (this can be done on or off your arm--just be sure to stretch the stockinette into shape around the foam).
8. If you like, you can use a Sharpie to label the areas that should meet in the bend of the elbow.
Now all you have to do when you want to wrap is slip these two pieces into place, and you already have stockinette and foam.
Please note that it is not necessary to do this procedure for the upper arm piece on the upper arm. It's more unwieldly. You'll still be able to stretch the stockinette to bring the two pieces together.0 -
What is rhe best sleeping position for right upper extremity and right chest wall LE? I've been sleeping on my back with the LE arm up 45 degrees on pillows -- but maybe that blocks drainage from thr right side? Maybe that's why LE is worse mornings? Maybe I should sleep on my left side
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I must have measured my upper right arm six times today to check for lymphedema. Surgery was Wed. So far so good. My MLD therapist let me down, she can't find the original measurements from July. And doesn't have the decency to answer my emails most of the time. She is proud of her stubbornness. She said so and that's when I stopped seeing her. Just a little gripe here.
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I noticed on my insurance statement that the two garments I sent back that hurt my arm and made it swell were paid for by insurance. I never received replacements and I wasn't looking for them as she lost my confidence. Should insurance be expected to pay for goods that didn't work
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No. Call your insurance and let them know. You should be able to get replacements
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LE started for me about halfway through radiation, and it was only in my arm initially, and I started wearing a sleeve every day. It has since migrated to my hand, so I now I wear a sleeve and a glove. I wear them during the day, but not at night.
The glove is a Juzo, and although the seams are flat, I've developed a sore in the area between my ring finger and middle finger. How do I get that to heal without going without my glove?
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How can I get rid of the painful LE in my rightthumb and fingers? I haven't yet figured out how to get a well-fitting glove; hospital gave an ill-fitting Nymed which has rubbed the skin raw inthe thumb-first finger web. The Vodder wrap I was taught worsens the thumb, so I've been afraid to do anything but elevation (which of course isn't working). I am borderline underweight, almost no subcutaneous tissue, so the "mild" LE to me is very painful and the stiffness limits hand use. My left hand is not good, old nerve damage and up until now neglect, because I'm so extremely right-handed anyway. So frustrated.
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rwiley, thank you for your post. I will be up for radiation soon but I don't want to get LE from it.... you say LE started halfway thru.. at that point did you think about stopping? Did you have the choice to stop? I would like to know why you kept going with the radiation. Did the LE get worse as radiation went on or after it was all done?
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Have any of you ordered custom products from Lymphedema products? And were you happy?
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tessu - You'll probably have to get custom gloves, make sure you have someone measure you that knows what they are doing.
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Marijen: Your mileage may vary. :-) I had a total of 20 lymph nodes removed. When I had radiation, it was my whole breast, plus they went after the lymph nodes in the clavicle area. *My* theory is that my body was managing "okay" for awhile, and then the added load of radiation was just too much for it.
I never thought about quitting radiation. My mantra was and continues to be: "Lymphedema or cancer? I'll take the lymphedema." That doesn't mean I like it, just that I will continue to learn to deal/live with it.
The LE remained pretty stable from when it started in February until July 4. That is the day I walked a 5k (my first since being treated for breast cancer). My hand swelled up, and I've been dealing with it ever since. The arm has remained pretty stable, but the hand is definitely my problem area.
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RWiley - good answer : ) I find out this week how many nodes involved, but if they were removed in the dissection why do I have to radiate the area? I think they want to do clavical on me as well. These are questions I was going to ask the RO when I see her again. People have mentioned that the doctor says "it is recommended". My question is by who? And would my RO recommend it or is she just going by clinic rules. It's a deep subject. Having it pop up months later is no fun to be sure. How bad is yours? My tires are a little worn.... I don't know if I'm up for it : P
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Marijen: My LE is not that bad. At least I don't think it is. For me, actually the worst thing about it is that it is on my left side. That means that I can't wear my wedding ring; either my hand is swollen, or I'm wearing a glove.
When it first presented, I didn't think it was LE--I didn't really notice any swelling. What I noticed was a tightening in my forearm and bicep. I was sure it was muscle related, and I mentioned it to my RO on my Wed appt thinking he'd refer me to regular physical therapy. I almost laughed when he mentioned LE right out of the gate; I was sure he was wrong, but I humored him. I saw the LE therapist on Friday, and by then I could see some swelling. On Monday I got fitted for a sleeve, and started wearing it every day. On Sunday night, I was putting some glasses away in the cupboard, and noticed that my arm didn't feel tight or hurt when I did that. And I thought "hmmm...I guess the RO *did* know what he was talking about.
As I understand it, the radiation is to go after any cancer cells that *may* have escaped. In my case, 4 out of the 20 nodes that were removed were cancerous.
At my treatment center (and I would guess this is a common practice elsewhere), they have a "tumor board". It consists of surgeons, MOs, ROs, pathologists, and I'm not sure who else. So it's not just one person looking at my situation and deciding on a course of treatment, it's a group of people. And there are "standard protocols" that they follow.
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Ok rwiley - that is something to remember. They do say the sooner you catch it the better off you'll be. I hope it just goes away now, it hasn't been that long. thx.
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rwiley - is your glove an OTS (Off The Shelf) or a Custom? If it is an OTS then you probably need a Custom. The 'average' does not fit all of us and can definitely do damage - not all of us have 'average' measurements.In my case it took several sets of Custom day garments to get the measurements 'tweeked' enough. I never realized it though all my life I had had big problems with getting winter gloves to fit right. Turns out that my hands are so what 'webbed' (always knew my toes are quite webbed but never thought about hands) so standard measurements used for the OTS gloves CUT into the webbing between fingers - yes literally cut. Over a few reorders every 6 mths for 2 new sets, my LET guy kept 'tweeking' the measurements to 'accomadate' my weird hand.
My suggestion to try to keep irritation down would be to carefully pull on glove and not pull it really tight between fingers. As soon as you feel any discomfort, take glove off for a few minutes and massage, then put it back on but not pulled up tight. A gauntlet, instead of a glove, might be a good option for you.
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Kicks: Thanks for the info. It is a Juzo, not custom. I think my fitter does a great job, Juzo, not so much. She measured my hand, and chose a glove according to the measurements. I put it on, and within 5 minutes (or less) my fingers were going numb. So we moved to a larger size. The fingers don't go numb, but because it is bigger, it doesn't provide enough compression through the main part of my hand; everything was pooling on the back of my hand between my wrist and the base of my fingers. So the therapist suggested putting a foam pad in the glove, on the back of my hand. That provides an even compression, but the seam is causing a problem. :-(
I wear LympheDIVA sleeves, and yesterday I ordered one of their new gloves. I'm really hoping that since it's seamless, it won't cause any sores.
In the meantime, I'm trying to get the sore healed up.
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LindaKR - All my garments (day and night) have to be Custom. My day sleeves and gloves are Custom Juzo and it did take a while for my LET guy to get the measurements tweeked enough to work for my weird hand, I have no complaints at all. Just got a new Solaris Tribute a short while ago (my last one was almost 6 yrs old) which also has to be Custom - again no problems at all with it. I am in a bit different situation than most - my care is through VA so my LET guy is the one who is responsible for what I need and he is fantastic.
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rwiley - do you know level compression you are being given? Not all compression levels are all. I have to have low compression or my hand puffs up huge quickly.
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