ALL THINGS Gloves and sleeves
Comments
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Jmo06,,, i bumped a thread about the magazine0 -
Josh is the best! Love the sleeves on CureDiva too! Watch out for cuts on your cuticles. Mine goes nuts with those http://www.curediva.com/lotus-dragon-tattoo-armsleeve.html#sthash.I0rvxugR.dpbs
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I just picked up my custom sleeve and glove yesterday and while I only had them on for 10 minutes while I was there the circulation to my fingers was compromised immediately. The fitter just told me to wiggle my fingers and said it would take a little time for my body to get used to the pressure. My fingertips meanwhile were turning purple and cold. After I left, for several hours after having tried on the sleeve my arm was hurting. There is no way that I can wear these garments so I've contacted her to let her know I am needing to return them. I'm feeling so frustrated.
I have stage 0 trunkel LE and due to prior whiplash injuries the rerouted lymphatic flow across my back can be less efficient at times. When my back goes into spasm my lymph backs up into my arm, and generally I have a small amount of congestion in the back of my left arm and in my arm pit. I flew to Hawaii in January and had increased swelling in my breast and back of my arm which is when I started going for lymphatic massage and myofascial release with my physical therapist (two separate practitioners).
I was advised to get compression gear to wear during exercise, vigorous activity and travel. Right now I'm feeling a bit trapped (and crushed) by poorly fit garments. Argh!
I found the Solidea Active Massage sleeve mentioned on a LE blog and wonder if it might be more appropriate for me. Any insights to share?TIA
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Agness, the compression is quite intense. And it makes my thumb purple and cold also. I take the gauntlet off to rest my thumbn, and also when I wash and dry it, I put a thicker marker in it to dry. I have no idea in the world why the thumb part hurts most women and why they don't fix this problem.
I am in the same position as you, with more truncal issues than arm, and the back spasms. I am always looking for advise too. I wish you the best!
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TAKE IT OFF IF YOU FINGERS ARE TURNING PURPLE AND COLD! Something is not right - the 'fit' or the level of compression. Besides the measurements - there are other important issues. We are all dfferent. Was the 'fitter' an LE Therapist?
Some of us are more sensative to pressure than others. For me, heavy compression makes my LE horrendous but light compression works great. That's why there are different levels of compression. Even with correctly measured custom garments, there can be mistakes made by the sewer at the factory. That happened once for me - sent back immediately.
There is no way I can use/fit in OTS garments. They do make OTS in the compression level that will work for me and my hand is slightly 'webbed' so no OTS glove is a possibility. I do wear my sleeves/gloves all the time I am 'up', my SolarisTribute night garment at night an use my Flexi-Touch MLD daily to keep my LE and need control.
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My problem is also truncal - but i can't believe the sleeves or gauntlets are supposed to cut off circulation. I was measured recently and got custom sleeves & gauntlets and I don't have that problem. Hope one of the more experienced ladies will post.
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Agness-I just got my sleeve 20-30 mm compression and also had to remove it as my neuropathy pain became unbearable. I was not able to get the gauntlet yet as the expense is high so hoping when worn together may be better. My lymphedema is right arm on my mastectomy side .
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Thanks for your replies.
What was worse is that the sleeve, having had it crush my arm the other day, triggered swelling in my lower arm, a place I haven't had any issues previously. It was very clear that the sleeve caused trauma to my upper arm. My boys (age 4 and 8) could feel the difference between my two arms, the affected and not. My 8yo said that it felt to him like my affected arm was disorganized which was a good way of putting it. I was able to do some manual drainage last night and could feel some of the lymph moving out (that shivery feeling) but it's hard to do it all myself. I've got an appointment to see my LT on Tuesday, the soonest could make it work.
The fitter is a breast cancer survivor and massage therapist who does fitting regularly. My LT sent me to her and said that the fitter would make sure to get it right. I didn't see that at all. It took 2 months for me to get my sleeve after I was measured in February and she didn't seem to understand that it was way too tight for me. I'm sending it back. So frustrating as I'm now two steps back.0 -
2 months is a LONG time to wait for custom garments. The average for me from wben I call K for my 2 new sets every 6 months is 3 weeks. I have gotten the new ones a few times at 2 weeks, usually at about 3 weeks and once at 4 weeks but mail was going through was very slow as we had had back to back to back blizzards.
My LET guy is also my fitter/orderer. He is an LE Therapist and has his Masters in OT. The first set he ordered for me were heavy compression which made me majorily swell within an hour. Called him and he ordered another set in low compression that day and I took the 'bad' set back to him the next day and went back to wrapping in day and using my night garment at night. The low level worked great but it did take several times to get the measurements worked out with my somewhat 'webbed' hand so the glove did not actually cut into the skin between fingers. Once one glove of the order was no where near my measurements - sent back and corrected.
There is no 'One Size Fits All' with what works for each of us individually. We have to learn and find what is right for US - not someone else.
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I too waited two months for a custom garment I'll rarely wear. It's made of flat knit and it's just heavy and tight. I don't know if these things are the fault of the fitter or the company. I suspect it's the latter. I've decided to buy off the shelf garments myself in the future. They fit well and don't cost much more than what insurance expects for me to pay for the same things.
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It is great if you can use OTS - not all of us can and have to have custom.
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Kicks- I am wondering if Komen Foundation may help some of us out with costs as my iinsurance covers nothing and if you need a new set some companies do not accept returns.
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My custom sleeve hurts, a level of discomfort that is distracting but my LT says it fits fine, I'm supposed to use it during activity. I'm thinking I need less compression but was told that most companies don't make custom sleeves in the lowest compression and because my arm is longer than a long I have to have custom. BUT I have more problems with truncal than arm and I'm having more problems with the LE in breast now. Thought it might be that I was using the flexitouch and not doing massage anymore so figured that's the problem but maybe it's the sleeve causing more edema in my breast. I've been wearing the sleeve a few hours a day to try to get used to it. This sleeve thing is quite a process.
Interesting thought that it could be the manufacturer not the fitter. Mine is a Juzo which I believe isn't a flat knit, no seam. Would really like to know the brand of custom sleeve others are using.
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SusanSnow - Nope - it shouldn't hurt. Can you check w/another PT or go into one of the specialty stores where they sell BC products? Or call your MO? Or even call the mfg. Most of them are good about answering questions. My arm compression is light since my LE is truncal, 20-30 with both ready-to-wear and custom. And I too need long. I like the Jobst Bella Lite (long). The standard Jobst long is longer than the Juzo, so is much better for me. My custom is a Juzo Silver and not as long but a better fit around the wrist.
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Grammy - I don't know. My care is through VA - so no insurance company involved. What I need is ordered and if there is a problem - they handle the 'billing' and getting it fixed. I get 2 new sets every 6 months. I have never tried to return anything when used after being used when I needed newa new one. The first set was returned because wrong compression level and glove that was wrong.0 -
Grammy I doubt Komen will help but if they do you need to be really poor. If you can use off-the-shelf they are cheaper online at some sites. Your physical therapist can measure you.
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The sad thing is that I found out that the contract price with my insurance company for an OTS Juzo is $475 versus the $80 approx. that it costs.
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runnergirl - I had to go to a custom 1-piece glove/sleeve in order for my hand to stop the puffing up. I went to Just Like a Woman on Macadam in Portland, Oregon (I live in Reedsport, down on the south coast), any way the lady took about 2 hours measuring and explaining. I'd tried everything else, and my LE therapist had been telling me for a year that I needed to go to the one-piece w/glove, not gauntlet. I got Juzo, they are great. But if you don't have insurance they cost about $700 each. I stocked up on them before I went on Medicare (since it doesn't pay). The lady that helped my was a lovely, little lady, probably in her late 60's with an old fashioned name (wish I could remember it right now), I know she wasn't the owner, but had worked there a long time. I highly recommend them. They bill your insurance also. You can check out their website at justlikeawoman.com but it doesn't show much.
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My custom sleeves only took about 3 weeks.
You're fingers should not be turning cold and purple. If the compression sleeve is cutting off the circulation take it off and take it back!!!!!
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Susan,
I'd imagine a sleeve that hurts could do more harm than good since pain can lead to swelling which can lead to pain, at least as I understand it. My first custom was a disaster, with waaay too tight glove, juzo, I think. My fitter, however, is awesome and is the only one who didn't give up on me when none of the ots garments worked (and most made things worse). I'm now in a jobst custom glove to axilla with a strap as bands on my upper arm just back everything up for me. Pretty, no, but has helped me finally get my swelling under some reasonable semblance of control and allowed me to start exercising again. Personally, standard 20-30 compression cuts off my circulation and alsomakes my arm rebound and swell worse than wearing nothing at all. Maybe ask your fitter to "measure loose"? I know mine even sometimes figures out formulas for certain people to adjust the measurements to get an ok level of compression for them. Good luck, this really can be so very frustrating.
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I had used compression garments before I got my one piece - the fitter was awesome with the adjustments that I requested. My thumb joints are gone so if the compression is too tight over my thumb it causes more pain and swelling, so she measured a little looser there. I too get rebound swelling if it's too tight, if you go with an experienced fitter it makes a huge difference. I'm interested in learning more about your glove to axilla from Jobst. Mine are like that without the strap by Juzo, no strap thought. can you please explain how that works floaton? My LE therapists told me to stay away from straps, probably an individual thing. Does the strap go over your shoulder?
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My real need is for the compression during flying though I was advised to have a little extra support during exercise and anything more than moderate activity.
I read that for flying you should increase your compression above what keeps you stable during regular times. If I'm relatively stable most of the time, as long as my back (from whiplash injuries) is behaving itself then I need to figure out what that next level is.
I've got an athletic compression top on order that I need to try on at a local running products store. I'll see how my body feels about that. I could also see about short-stretch bandaging but I don't have any so that would require more research and likely consultation with an LE specialist.
I flew to Hawaii from Seattle a month after rads completed, before having any lymphatic massage work done, and I did experience increased swelling in my breast and axilla. My swelling has greatly reduced due to lymphatic drainage and rerouting by my lymphatic therapist, self-massage, and myofascial release work by my physical therapist.
Hopefully I'm in a better place but I guess I won't know until I try flying. No travel plans at the moment even though I promised myself that I would travel when treatment was over. I had no idea how complicated recovery would be
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Linda, It looks kind of like the juzo varin with the strap, but has an additional strap that travels around your waist, I guess to help keep the shoulder strap in place. I leave that piece loose as I don't want anything around my chest/waist as it backs up my truncal le. Usually I pin it to the (non LE side of my) aemona Hannah camisole I wear most days to help keep it in place or it does wander a bit. Maybe that'swhy your pt said stay away from them? It isn't always the easiest to put on, but now that I have the hang of it it's not that bad. A band around my upper arm consistently leads to a painful pocket of inner upper arm swelling for me
. I tried it as a gauntlet to axilla first and ended up with finger swelling, so glove to axilla it is for me! It actually squishes my knuckles less and I can use my hand more normally with the glove. And the material for this type dries really quickly if it accidentally gets wet. It does have seams, but I don't find them irritating. I did get the inner elbow lined, and still have to use glide right there or my inner elbow gets irritated, but I have really sensitive skin. I think for most people, just the soft lining would work fine. My fitter warned me that they don't last as long as other brands (3-4 months of daily use), but really nothing else worked for me. 0 -
Does anyone make a one piece custom glove/sleeve with less than 20-30 compression. That much compression is painful and seems to make my swelling worse? I am getting extremely frustrated. I have been to LE therapists and they just say I am an outlier and shrug their shoulders like I am crazy or something.
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runnergirl, I don't know if anyone makes them lower than 20-30, which I think is ridiculous, since it appears there are more than a couple of us who have trouble with this level of compression. My fitter is awesome and has figured this out for me... I'd be happy to pm you her name/contact info if you happen to live in the northeast. My LE pt the other day referred to my le / arm situation as "idiosyncratic". It is so, so very frustrating when no one can help you
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Hi Runnergirl,
I know I was reading an old post, but did you ever find a custom sleeve/glove? I think it is exactly what I need but my fitter said its not something she would do. My problem is on the top of my hand. My arm doesn't swell much but even the 20-30 is too much compression. Just wondering if you have found a solution. My physical therapist cut me some sleeves out of a stretchy material and I like wearing those the most. It looks hideous but feel the best and itdoes the best job.
I would welcome any current comments on hand swelling. The 20-30 sleeve is too tight so it keeps the fluid in my hand. I'm sure some people have written about this but there are thousands of posts I have been trying to read. Plus just buying things and them not working out can get expensive!!!
Thanks,
Denise
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Perhaps your glove is not right size wise. Does your glove have a pocket for a spot? My gloves have a pocket on them as it feels better to me but I do not use a spot in it. Do you put your glove over or under the sleeve? It does make a difference. It takes a few seconds more to roll the wrist end of sleeve back to put glove under it but (for me anyway) does make a difference. If the sleeve is under the glove, the edge of it is pushed in and thus can limit flow like a dam. If glove top is under tbe sleeve it doesn't. It does take a second or 2 more but - - -. It works.Being 'too tight' is not necessarily the compression level but can be the fit. You may have been sold a sleeve that is too small.
In my case I do know that the compression level was the problem as when I got the low level replacements on the same measurements - was good. I do have custom garments as I can not wear OTS. It took a while for my LET guy to get my glove down good because I have Weird hands. I never knew it but my fingers are somewhat webbed so there is no way I can wear gloves that are designed for a 'normal' hand. My arm does not fit into the 'standard' either.
I am fortunate to have a fantastic LET guy who gets my garments for me and if there is a problem - he addresses it. There have been a few times that garments had to be returned because there were mistakes in them. (Oh yeah - my care is through VA and has always been all I could ask for.)
We are each so unique - have to learn what works for us, individually, which is not necessarily what works for sanyone else.
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no not yet I have decided to wait until after my reconstruction surgery as I am hoping once I get the expanders out I might get some relief. I known it is a long shot but I have tried so many off the shelf sleeves and gloves and none are working. If it doesnt then its on to customs I guess. I feel like I am all alone in this as even the experts seem baffled by me,
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