ALL THINGS Gloves and sleeves
Comments
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MLD and it seemed to work and it was gone for a few months.
It really doesnt go away
but can get under control. IF your LE is mild, you may be able to get away with a farrow glove. Having said that I would want something MORE substantial for flying IMHO. POSSIBLY something in the JUZO line. You may nede a better LEIst. You should not have to wrap 24/7 ESP if mild! I see you are in Boston. I live in Spfld. I am going thru some' LE crap" right now, but feel free to PM if you want to put heads together on where you might go.PLS NOTE:I am not an expert by any means. This is JMO.
Good Luck!
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Thanks ladies! I have a juzo sleeve and I like it. Its comfortable. Im going to do some research and find the best LE PT in the area and get an appointment. The glove just doesnt seem to be doing what it should.
Seems like I had it under control and I want to do my best to make sure it doesnt get worse.
Question - do everyone normally wear something different during the day vs. at night?
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find the best LE PT in the area and get an appointment.
YES!
Thats the ticket!
You do wear diferent gear at night. The daytime sleeves are never to be worn at night. I'm sure you wil get more specifics as I do not currently wear a night garment. I just wanted to say that I believe your LEist will be of the best help. ... and I presume you were taught to do daily MLD. The hand is very tricky. Hang in there !0 -
Mardi, I wear a Solaris Tribute night garment when I sleep. It give me a wonderful, soft, cozy arm hug that makes any LE ache go away. Expensive, though.
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At this point, I dont even care about the money. I just want something that works and is as comfortable as it can be. *adding Solaris Tribute to my list*
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I'm a melanoma with SNB survivor--surgery was Apr. 8. I knew enough to insist on referall to an LE therapist, who taught me self-massage and then when I said I was going on several long plane trips ordered me a custom sleeve and told me to wear it all day every day along with a compression t shirt. I've got a little visible swelling towards the back of my armpit and perhaps some softness in my upper arm. The melanoma was on the back of my upper arm, stage 1b.
My LE therapist said it was ok to wear a sleeve without a glove if I was careful that the end of the sleeve sits on the wrist bones. She said the veins and lymph vessels go down between the bones at the wrist and the sleeve resting on the bones holds it up so it doesn't block the channels.
My sleeve is a Jobst Elvarex soft custom. I find it rough on the tender skin of my upper arm if I move my arm a lot, and it folds and irritates the inside of my elbow. I tried BodyGlide inside my elbow today, but it doesn't seem to help. How does it look?
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Pam, hello!
I've been following your posts on the other thread too. Welcome! I have to agree with Carol that you need to think beyond just prevention at this point. The swelling you have already needs to be addressed for two reasons: getting it under control early means MUCH easier on-going care; and, stagnant lymph fluid creates a high infection risk (it's warm and protein-rich--bacteria love it
!)The sleeve you have is heavy-duty, very possibly a lot more compression than you need. The risk of moving fluid into your hand with a sleeve like that is actually pretty high. Trusting to your wrist bones to provide clearance for lymph flow seems iffy at best--in the course of an active day slippage will naturally happen, and at any rate the vessels are just below the skin, cranky and very easily offended!
I know that because that was exactly what happened to me: I had a bit of truncal swelling, and my first therapist ordered me a too-sturdy sleeve and no hand protection. Wasn't long until my whole hand and arm were involved as well, the fluid trapped by a hefty sleeve and no hand coverage. Usually for risk reduction purposes the lowest compression possible is desirable (that's be 15-20mm/hg). Here's an article by a reliable lymphology doctor about why hand protection is necessary when wearing a sleeve:
http://www.lymphedivas.com/handprotection.aspAnd here's information about how to find a well-trained lymphedema therapist near you, in case you'd like to seek out a second opinion:
http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htmI'm personally awfully glad you're here and willing to share your experience with melanoma. Thank you! I'm anxious to bring more awareness to the fact that it's not just breast cancer treatment that can result in LE. The gynecologic cancers, prostate cancer, head and neck--it's a risk whenever nodes are removed or blocked with scar tissue, and it goes undiagnosed way too often. Brava to you for being on top of this!
Be well!
Binney0 -
My LE therapist said it was ok to wear a sleeve without a glove if I was careful that the end of the sleeve sits on the wrist bones.
Yikes, pam!
I can visually see where slipage might occur around the elbow area with movement throught your day. You may not need a glove, but I would think Any good Lleist would insist on a gauntlet. You simply cannot be that careful and function /move throughout the day IMO. I am very concerned for your hand !
I have LE in mine, and once there it is very very challenging.Please re-consider.
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I am new to LE, and have concerns about my hand. I am wrapping fingers, hand, and arm as instructed by LEist, fingers are responding, arm is responding a little, but hand is not. Does anyone have suggestions? I am supposed to get an adjustable garment and gauntlet next week - I can't remember the brand name, but the LEist measured me and thought I could use off-the-shelf size as it is much less expensive than custom-made, and the company will take it back if it doesn't fit and apply the $$ to custom-made. I appreciate all the information here - this is very overwhelming to me right now.
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Linda
Sounds like you need a glove. Until you can get one, Binney had suggested I order an OTC ISOTONER (amazon.com) I also use an OTC IMAK ACTIVE(not the IMAK regular) from amazon.com . I find the IMAK ACTIVE is *almost* as good as my RX and would suggest it if mine was in the laundry or as a temp like you may need right now.
Many of us use a FARROW glove (RX) and if all you need is light compression , you may be a candidate. However, there are ' sturdier' gloves for folks who need more. Right now, my Farrow works great, but if I were to fly for example, I just might want something more substantial.
My fitter had custom ordered 2 gloves for me that were horrible and cut my CIRC. off. I returned one and refused the other.
If you cannot open and close your fist with a glove, dont be afraid to send it back.
Also- we wear the seams inside out ( say on the IMAK ACTIVE) since it would be very rough on your hands not to, and the last thing you wnat to do is crack your skin.Use lots of lotion before bed/overnight. (Something like a Eucerin, something gentle)
I found the (RX) black farrow on www.brightlifedirect.com if you want to do a search. Beware because these are very hard to return . You could call toll free and spek to a rep there. They are helpful.
Hope this helps a bit.0 -
I am also a Farrow wearer. I use my sleeve only for flying. (Medi95 lightest compression). Purple,I didn't go up a grade in comprssion for flying even though it was a 12-hour flight. The Farrow did just fine, and once in a while you raise your arm and pump etc. I also got the Active Imak, and it is quite good, although the some of the fingers are a tad too long, and you can't trim them like the Farrow. Nevertheless, it is a cheap extra glove that definitely keeps down swelling by me. By the way, how can you wear an IMAK inside out? That would bother the palm with all those gripper points.
I agree with the others that you need hand protection. If the LE already affected your hand, a glove is called for. By the way, I bandage my hand with gauze at night and a comprilan bandage for the palm and lower arm, although I do the latter very lightly (I don't even think it compresses anything, just keeps stuff in place) and raise my arm/hand with a pillow for sleeping. (Although I always roll over at some point in the night). Wrapping at night keeps the swelling down very nicely. Today, afternoon I rested on a recliner and had the IMAK on. Was OK as well. Good luck on your journey in LE land. You will find the forum and SUSO very helpful.
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Purple,I didn't go up a grade in comprssion for flying even though it was a 12-hour flight.
Great to know!
Sorry- I stand corrected. I wear the farrow seams on the outside. Thanks for being so astute, dassi!0 -
I tried calling a different LE therapist, and she said the one I have been seeing is one she would refer patients to when they were beyond her expertise. I did start the process of trying to get in with the other one she recommended . And mine did contact me back and say to make an appointment, which I did for tomorrow. I did also order IMAK gloves to wear when flying, even though the second therapist I talked to said that if my hand wasn't swelling I didn't need a glove.
Has anyone experimented with athletic compression sleeves for light compression? The 23-32 custom sleeve the therapist ordered me is so uncomfortable when I move around not only because it is so tight but also because it folds sharply at the elbow and because the material is rough against my skin as my skin moves slightly inside the sleeve as I swing my arm.
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Pam, I've not experimented with the athletic compression sleeves, but the first thought that comes to mind is that their compression is even throughout the sleeve, where our medical compression sleeves provide gradient compression--more at the wrist, reducing gradually over the length of the sleeve so the least amount of compression is at the upper edge. I would worry that an athletic sleeve might direct fluid toward the hand as much as upward to drain out of the arm.
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if my hand wasn't swelling I didn't need a glove.
I'm no LE therapist, but I cannot imagine an OTC glove could be contraindicated when flying- for anybody!
I would take Carol's post to heart. We need gradient compression.0 -
KS1, If you still haven't received your set, I would call Juzo directly. Bypass the DME dealer completely and explain your issue and frustration to a regional manager. I had a very similar problem with a Jobst sleeve order and was given excuses week after week by the DME company, so I called the local Jobst Rep, who took my story to the regional rep. They were kind enough to find my order immediately, and make me a sleeve from their samples budget and ship it to me right away. For FREE. Now THAT's customer service! I will alway go back for Jobst products but never use that DME dealer again.
Have a wonderful time on your trip!
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Thank you so much for the info on gloves! I saw my therapist yesterday (the one Iike (female, has LE herself) better than the other one (male, very nice & professional, just less understanding)) and was SO EXCITED that I could actually SEE ligaments on the back of my hand for the first time in 2 weeks!!!! She told me that the Isotoner may be adequate for me, so I ordered 3 pairs to get free shipping; not sure what I will do with 3 left gloves, but maybe someone here needs small - if so, PM me and I will send them to you when I get mine. I have a sleeve that is grade 1 compression that is custom made but I never used it - have learned a VERY tough lesson!!!! But I am a little encouraged, working hard to do everything I am told, trying to learn as much as possible. Whoever said there is a steep learning curve here is SO RIGHT! But from all of you and my LE therapist, I am learning that life CAN go on, even if this IS a full-time job!
The therapist also introduced the idea of a machine that has a sleeve that does graded compression intermittently that is similar to MLD and she said I may qualify for it because I live so far from available therapist (driving an hour to get there, an hour back) and DH travels a LOT so is not available to help me with the MLD and bandaging. So do any of you have any experience with this type of equipment? Is this even the right thread to ask about it or is there another thread for this?
Again, many thanks. Peace.0 -
Linda, hi,
There are several brands of LE "pumps", the major players being LymphaPress, BioCompression and FlexiTouch. The first two market through second-parties, including some therapists, and in the past have been inclined to pressure patients to some degree, so their marketing is a bit murky. Flexitouch has a great deal of research to back their product, some of it not even commissioned by them
! Because of the pressure that has been a part of this business, do be sure to request a demo of a couple of them, which can be done at your therapist's office or your home. Flexitouch is generally considered to be the best for bc-related LE because it clears the entire trunk area and because the research is more extensive. It is also expensive, but if you request their help they will deal with your insurance company themselves. On the other hand, there are women here who use the other brands as well and have had good results, so it's your call, but you'll want to be an informed shopper by trying them out before you commit to any one of them.Advantages are as you note--it reaches the back even when DH is away. It is not, though, a replacement for a hands-on therapist visit, so I have less confidence in that as a reason to use it. It's a replacement for your own at-home self-MLD, NOT for a therapist. It can't evaluate, sense changes under the skin, or offer the on-going advice we need with this chronic condition. The major disadvantage women note is that it's time-consuming, moreso than self MLD. (A more minor issue is that it takes up a lot of space in your home!
)Do let us know what you discover--we all learn from one another!
Hugs,
Binney0 -
told me that the Isotoner may be adequate for me
That would be great!
You really might want to try the IMAK ACTIVE 'fingerless'. I (personally) find them much better than the Isotoners. Good Luck.0 -
Binney, thanks for the info on the pumps. I don't remember the brand she mentioned, but I will be sure to check it out. I am only allowed 12 visits for LE, and after that have to hire a personal therapist at my own expense if I need further care. I didn't even think about the problem of monitoring for skin changes, etc. I wonder how the BS - who told me LE most likely wouldn't be a problem for me and if it occured it could be taken care of - intends to monitor for this. (sarcasm - I have little hope or faith in most of the docs on my team, and I am at one of the better-known cancer centers).
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pamsc - I wear the same Jobst Elvarex soft custom sleeve and have crazy sensative skin. My LE therapist recommended getting it made with a 'pocket' on the inside made of silk. It is a rectangle of silk sewn into the inner elbow area that extends from the elbow crease about 2 1/2 inches up and down from the crease and is about 5-6 inches lining the circumfrence. It was truly a lifesafer for me because the irritation of my first sleeve was causing rash and small rub sores. I have the glove as well and found that the irritation there was in the web between Thumb and forefinger and use some soft cotton tucked into that spot as I putt the glove on and it is very comfortable. I also think it is risky wearing the sleeve without the glove or a gauntlet so always pair the two.
One other thing, the rolling and moving at the top of the sleeve was also an issue for me for the same reason, very tender skin being rubbed every time I was active. I ordered the next sleeve with the silicone dots around the whole upper edge and now it stays in place with no sliding and have not had any more irritation (other than the normal 'readjust' we all do 30 times a day
. I find THAT irritating )I guess it is all trial and error in the beginning but I have saved alot of angst from learning from these knowlegeable ladies!
Hope you find the best solution for your comfort!
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Linda - my LE-T said the only pump she'll recommend is the Flexitouch, she says she's seen it work, and it does a good job.
Binney - I haven't been coming here often, but I really should - I learn so much from you, every time, THANKS.
And I really got on here because JoviPak is having another sale and wanted to make sure you all knew - http://www.jovipak.com/may_madness.html A lot of times their sales make the products more reasonible for those of us whose insurance does not cover compression garments
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Hello to all! I still read all the LE posts morning and night even though my LE is calm at this time. I was lucky enough to get referred very early and to a great therapist..and great coverage. Still do mld, but must admit not religiously but do use my flexitouch and what we call opening ceremonies mld. Just wanted to add the flexitouch seems to be a good machine. There are things I would change if I were the designer, though. Beatmon
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Ok the stuff that cleans the silcon dots is Amonea for slicon breast forms. I toothbush it on and rinse off and the arm banddots really hug nice then.
Maxine, I was so sensitive in the elbow that silk lining was to rough
Binney saved the day with having me use Glide an anti chaffing rollon that the runners use in races.Wonderful product. Don't use it much now as my oder sleeves are broken in but when I get new ones I use it. Binney says to try cornstartch in a toe of a stocking (nylons?) and pat it on the inner elbow. Anyone try that trick? Also my inner elbow seemed to get a bit use to the raunchy rubbing. But it was sore for probably 6 months until I built up to it.I also got a hard pimple (I think they call it an ulcer but not even my mld girl is sure what it is but it came from the glove 2 weeks after wearing it.) in my web from glove rubbing. It won't go away so i use a bandaid daily on it and then put my glove on. Pain in the butt when you have to take off glove and wash hands, I keep spare bandaids everywhere and they are cut to a smaller size so they won't get easily wet.
I just want to comply
.... Now get me the stuff that works and fits comfy so I can.
Grrrrrr. Opps wrong thread.0 -
hugz4u - I'm going to try the cornstarch route today and see if that makes it more comfortable. The silk really did help me for the most part for sensitivity so I'm sorry to hear it didn't help you. Sounds like Glide did the job though! I hate wearing the glove regularly for the same reason as yours, I get small ulcers in the web area. The soft cotton draped over the web before putting the glove on worked great for me and can be used over and over after hand-washing. I haven't had a new ulcer since switching to the cotton.
The perspiration that builds up on a warm day like today makes being stuffed inside anything compression hard to take, but I can see where cornstarch might really help there. Is Glide meant to be used as an anti-perspirant on the arm or just a barrier for chaffing?
I took months to figure out the exact combination of glove, sleeve and truncal compression to get through the day almost comfortably, and now I'm trying to figure out how to stay dry!
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max, glide is not deodorant. get it from a runnung store. i think walmart has it to. it is anti chaf and looks like a deoderant stick. there is a glide deodorant too. don't get mixed up.
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Hugz, I recently sliced the skin off my thumb just below the nail bed (don't ask--it was stupid and clumsy
), and of course the glove rubs right there, peeling off bandaids and driving me nuts. I finally started using a liquid bandaid (the one I have is called NewSkin) and--voila!--it didn't hurt, didn't get abraded, and it healed! Since then I've used it on one finger that gets ouch-y from rubbing by the top of one finger of my glove and it's just perfect. Maybe it'll work for that spot between your fingers? If your skin is especially sensitive I'd try it on an area that doesn't have LE first, y'know?Hugs,
Binney0 -
Binney, cool idea. so do you wash it off every night and reapply or does it wear off. if this works for me i will be eternally grateful.
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Hugz, I removed it every couple of days and let it air when the glove was off. It never did wear off, so that was nice. I was skeptical because it got no air, but it healed nicely. I don't know how this works, so do keep an eye on things when you try it. I'll be curious to hear how it goes for you.
Binney0 -
I got a new adjustable garment from LE therapist on Thursday, gauntlet did not fit but sleeve did. So she suggested trying sleeve with one of my new Isotoner gloves. But, alas, the hand swelled by the end of the evening. So had DH bandage at bedtime, wore until next evening, got improvement. Friday night just re-did bandages. This morning tried new adjustable garment with finger wrapping, but did not put bandages on hand; after 5 hours, still had some hand swelling. So now have fingers bandaged, hand bandaged, trying garment with that combo and will check before bed to see if any other issues. I am SO FRUSTRATED in not being able to use my hand easily. Typing is laborious here. Can't even get simple things done - takes the whole day to wrap, unwrap, MLD, re-wrap. Am totally bored out of my skull not being able to use my hand. Does it get any better? Any other suggestions? Had to use ativan for anxiety for first time in months today just to get through the day.
Thanks. Will be calling LE therapist on Tuesday - of course everything happens on holiday weekends! Hope you all have a great Memorial Day.0
