lymphedema compression sleeve and glove

navy1305 · December 2016

Hello everyone,

I underwent a right mastectomy and sentinel lymph node biopsy on Tuesday, 12/13. I was given a lymphedema compression sleeve and glove to wear to prevent lymphedema. I was just wondering if there are any other sleeve/glove-wearers out there, and for how long after your surgery did you need to wear them.

Kicks · December 2016

It was 9 weeks after UMX that my LE started. It was 6 weeks into 12 weekly Taxol when it showed up. It was my Dr who first noticed it and quickly got me into my OT LET guy.

I was not given a sleeve and glove until LE developed - from what I've read of other's experiences, getting garments that quickly after surgery is very uncommon. For everyone, it is not as simple as pulling a sleeve and glove off the shelf and it be a good fit or the correct compression level for each of us individually, so just going with the 'middle of the road' levels can actually do harm to some of us. Not all will fit into the OTS garment measurements either.

Were you taught MLD or told of what can potentially bring on LE to avoid?

Once LE developes (IF it does) - it has to be dealt with life long.

Others will be along with their experiences.

MinusTwo · December 2016

Navy - I agree with Kicks. I've never seen someone just given a sleeve after surgery. I would ask your doc for a referral to a certified Lymphadema therapist. But I expect there's not too much that can be done until the stitches heal & the swelling from your surgery subsides - which is often 6 weeks or longer.

navy1305 · December 2016

Hi Kicks and MinusTwo,

Thanks for your replies. I am still pretty new at this. I was not really given any information on lymphedema, but it sounds like something I do not want to get. I will call my case manager tomorrow (a nurse) to ask how long I need to wear this sleeve/glove and see if she has any other info for me. I have an appt. with my surgeon to check the drain on Thursday, but she said she might have jury duty so I might end up seeing her physician's assistant instead.

I was measured for this sleeve/glove this past Friday and given one glove and two sleeves; the second glove was not in stock so they are sending it to me in the mail. I have been wearing them 24/7 since I got them on Friday.

MinusTwo · December 2016

Navy - the link below is a fantastic tutorial & reference. Good luck.

http://www.stepup-speakout.org/

Kicks · December 2016

Day garments (sleeve and glove/gauntlet) are not intended to be worn at night. There are night garments for night use. The different types of garments are designed to work on different principles - active and passive. Day garments (active) are for when you are up and active/moving around, using muscles to help move the lymphatic fluid along. Night garments (passive) are for sleeping/not moving around to help move the lymphatic fluid along.

navy1305 · December 2016

Got clarification from my case manager, who talked to my surgeon, that I don't need to wear the sleeve/glove unless there is swelling. Thanks for the link and the info about the day vs. night garments.

Kicks · December 2016

If there is swelling you need to get to an LET.

So you haven't been taught MLD (Manual Lymphatic Drainage) massage or what activities to avoid which can be involved with the onset of LE?

If you want to see how different a night sleeve looks from day garments, check http://www.solarismed.com/products/tribute There are other manufacturers - this is the one I have.

MarciaM · January 2017

Hello Lymphedema sisters;

sorry to report that after a mastectomy in 2010, my left arm became swollen wit h rash t o twice its normal size over Christmas holiday. I put off going to the see nurse because Ive been stage 4 and going t o any dr. is no fun. I'm recovered from stage 4. Vegan diet and juicing really turned the key to healing for me. The rash caused the arm to become infected. I had to rap my arm in cold packs, ice packs on Christmas and then take antibiotics. getting the sleeves was near impossible. a few days of old packs and antibiotics with religious adherence to the le therapies including arm massage, and compression sleeve always , nd a week later the arm is normal gain, thank God. Im permanently handicapped i n teh right hand due t o a metastasis t o my brain so functioning around the house was horrible, challenging. I had t o hire help. Because I have lost use of the right hand. sorry for typos its the right hand issue.

Take heed and use the sleeve every day and don't let it get out fo control. Its a n issue that does not go way. I wish I ahd not had the surgery but then maybe I would not be here.

Take care all,

Marcia

Anonymous · January 2017

Marcia, congrats on 6+ years! And I am glad that you are recovered.

I just got my sleeve a few days ago, and I thought it was the right size when I tried it on in the office. By the time I got home, it was sliding down to my elbow! I called and they ordered me a smaller (smallest) size, so I'm hoping it will be the right one. But when I had it on, wow, the pain relief was instant and I loved the feeling. I'm sure I will hate it during the summer, aka hot flash season. My LE therapist said I don't need to put it on every day, since I don't have LE. But I'm going to try to wear it as much as I can.

Kicks · January 2017

Question Loving-is-Living - what is the top of your sleeve like? Is it basically just 'hemmed' or does it have a a band of slightly different material with little clear dots on it? Makes a lot of difference on the sleeve staying up. I had one sleeve early on that did not have the band and it would not stay up at all but with the band - it stays up no matter how active I am or what I am doing. For me - it wasn't an issue of size but the 'stability' (for lack of a better word) to keep the top where it should stay but didn't. Could also be an issue with length. Last summer while at the local Fair, a Lady came up to me and asked how did I keep my sleeve up (I had a tank top on so of course my sleeve/glove was visible) as she couldn't keep hers up above her elbow. She did not have the band on hers and when she pulled it up as high as it would go, it only went between 2/3 - 3/4 of where mine goes. Do have to say that me being 'leaner' than she was might come into play but - a good fit is a good fit no matter the size of the person.

The OTS (Off The Shelf) garments, while they do cover a range of sizes/differences will not always be suitable/fitable for all of us in the compression level we have to have. They do not make OTSs in the size/measurements and compression level that are possible for me to wear. So mine have to be Custom made to my measurements. When you get the 'smallest' garment, if it doesn't fit then you will have to go with Custom garments which are made for your measurements/needs. They are 'pricier' but what is needed can be gotten.

You didn't mention your glove/gauntlet - how does it fit? Sleeves should not be worn without glove or gauntlet. Again for me- gloves are a huge issue and took a while even with Custom ones to get them 'right' as I deal with Syndactyli (webbing between fingers) so what will fit someone with normal hands will not fit me and will literally cut into the webbing (PAINFUL). My LET guy is fantastic - the more perplexing I was, the more he researched and sought out others knowledge to give me the best.

Do not wear day garments (sleeve/glove) overnight. Day garments are designed for active time (being up and about); night garments are designed for passive time (sleeping/not moving around).

Anonymous · January 2017

Kicks, thanks for all the great info! Mine actually has the band with the rubbery dots. And it still slid down. It's 20-30mmhg pressure. When the lady was measuring me, I felt like she wasn't being exact enough. She wanted to measure over my clothes! No matter how thin it is, a half inch here and there adds up to the wrong size. I think that's what happened. The lady who measured me had no idea about how LE works. She said it had to do with how the body sweats. So she thinks that lymph = sweat.

I knew about the custom made sleeves before. Now with my new insurance I pay 100% of all medical supply. The trade off for low premiums. So I hope I won't need the custom made.

I wasn't recommended to wear a glove. I didn't know that they had to be worn together. Most of my problems are from the elbow up, but sometimes I do get tightness in my wrist, but that could be nerve related. I will ask about the glove at my next appointment.

3bears · January 2017

Hi ladies, I'm new here. I feelthe same way about this lymphedema business. I was sent to a place that only has one color/ one kind. You guessed it- the ugly kind that came immediately to mind when I was told I should always wear one for air travel and driving through the mountains. It's an ugly tan color that looks totally geriatric. I'm going to call lymphadivas.com. They have like 50 different patterns and colors. I don't have lymphedema but I sure don't want to get it. I'm 2 weeks post op. My dr said I could get it up to 20 years from now. Does anybody know if insurance will pay for sleeves when you order them online ? Also, when do we have to wear them? Just for traveling? I read somewhere that they should be worn for excercise. Going for a walk? Or to the gym? It's so confusing. I wonder if anybody has a better lymphedema specialists that explained things better?

MinusTwo · January 2017

eBears - Yes you can get it any time & pro-active is good. I only wore a sleeve & gauntlet for air flights in the beginning, but I was measured & fitterd by a LE specialist & an LE PT. Now after ALND surgery & rads I have confirmed breast & truncal LE so I wear a compression bra 24/7. But still wear a sleeve only for air travel and repetitive motions. Here's a link for a great site written in part by some of our BCO members. Is should answer some of your questions.

http://www.stepup-speakout.org/

3bears · January 2017

MinusTwo--Thank you

SpecialK · January 2017

3bears - just an FYI, Lymphedivas products fit me more tightly than my non-custom 20-30mm prescribed sleeves and gauntlets, even in the same compression level.I would also suggest that you start to wear any compression garment by wearing it for a short period - maybe a couple of hours initially, adding longer wear periods slowly. You don't want to wear this type of garment on a cross country flight for the first time.

MinusTwo · January 2017

Good point Special K. The first time I wore my custom gauntlets on the airplane, they about cut off the blood flow in my thumbs. Luckily I had my old stock pair with for the return trip.

cliff · February 2017

I was given a sleeve and glove a few weeks after surgery, along with physical therapist teaching my kids how to wrap my arm. possibly it is determined by how many nodes are removed, I lost 21 during surgery.

lymphedema compression sleeve and glove

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