I had a lumpectomy with removal of some nodes in February, and radiation. I am currently taking Tamoxifen.
I do not have lymphedema and my doctor is not concerned about it, but my aunt had it, and I am worried about it. I read that flying increases the risk and I will be taking a long flight soon. I bought a compression sleeve, but now I wonder if the sleeve could trigger swelling and if I will be better off not wearing it since I do not have any visible signs of lymphedema so far. Also, I do not have a glove and I just read that the sleeve is better used with a glove.
If anyone has any experience or knowledge that they can share with me, I would greatly appreciate it!
Best wishes to everyone!!
Maria - I wear a sleeve & gauntlet for prevention. I was fitted by a professional, trained LE therapist. I put the sleeves & gauntlets on one hour before any flight & take it off one hour after I've landed. My surgeons & MO also pooh-poohed any issues so I took myself to a doctor that was a wound care & LE specialist. Yup - mild truncal & breast LE on the left. And now after more surgery, active truncal & breast on the right.
Sadly most medical personnel don't know much about LE. I saw a speech by a Stanford doc where he said that the total education about lymphadema for most MDs during their 12+ years is about 15 minutes. Below is a link to a great thread that a number of our BCO members were instrumental in producing. Lots of good info. Good luck.
a glove or gauntlet is essential to kept fluid from being pushed into hand. Not just a sleeve for prevention.
I also do not have lymphedema, but like you have concerns. My BS wanted me to see a PT to at least have a discussion about lymphedema and what to look for. However, I just recently learned that the PT at my breast care center does not accept my insurance. (bummer)
I'm currently receiving radiation treatment. I will be vacationing in September and have a 5 hour non-stop flight. I'm worried about lymphedema occurring from either radiation or my future flight. I've been doing my own gentle exercises and stretches, but I don't know if that will be enough. I planned to purchase a sleeve and gauntlet from lymphodivas.com, but ordering online can be a pain when you have to make returns for sizing issues.
May I ask where you bought your compression sleeve? Also, how is the fit on it?
Maria my fitter is also my le therapist which is the best ever. She is willing to fix her mistakes if my custom sleeve is uncomfortable.
Phone a le therapist and ask who they would recommend if your getting custom otherwise a medical supply store has them. They should have a fitter there. Ask how many years they have been fitting. If you feel uneasy move into another supply store.
Or josh from lymphadivas.com is soooooo accommodating and helpful. We love josh.phone them and someone will help you measure. You can send back if it doesn't fit. Ask about returns
I have a different perspective. I fly for a living. I have LE and have done a study measuring before and after flights and have not seen any change. The reality: the study I was in (not yet published) is the ONLY prospective study on the effect of flight on LE. (There are two studies on the effect of flight on people *at risk for* LE: one says yes and one says no). The therapists say it can cause issues, but there isn't anything in the literature either way. I'm not sure how that idea got started - maybe they think that having less air pressure on the outside of your arm will cause LE. In reality, osmotic and oncotic pressure inside your arm coupled with the elasticity of your skin provide way more force toward preventing (or causing) LE than air pressure can. So much more research needs to be done!!! (BTW, that doesn't mean that no one is affected negatively by the flight environment - just that there isn't enough research.)
You need an experienced fitter, either a therapist or a trained fitter at a medical supply outlet. But here's some information to help you identify a good fit:
There are other things you can do as well when you travel, like avoid hefting heavy luggage with your at-risk arm, stay REALLY WELL hydrated, avoid salty foods, do some gentle arm and hand exercises at intervals, and from time to time take several deep abdominal breaths.
The wrong sleeve and glove compression level can cause swelling for some of us. I have tp have low level compression (18-21) or the garments cause major swelling in my hand within an hour. Some are very sensitive to pressure/compression. Some will need a higher level.
While it sounds easy to just 'get a sleeve and glove OTS, it is not a possibility for all of us. The level compression I have to have is not made in OTS that would come close to fitting me. Getting an OTS glove I could possibly wear is totally impossible without it being custom. I am syndactyly - meaning that my fingers are somewhat webbed. (Not as bad as some can be but still an issue.) So a 'normal' glove will literally cut the flesh between my fingers - very painful and makes open sores.
Just seeing "a PT" does not mean you will get actual, correct information about LE. It takes additional educatation for a PT or OT to also be an LET (LymphEdema Therapist).
My LET Guy (an OT) is fantastic. Because of my unique issues, he had a challenge with me but has worked through it and can now just order my 2 new custom sets of garments every 6 months with no issues.
I can't comprehend just walking into a 'medical supply store' and dealing with a clerk who has no knowledge of ME and my issues.
I got lymphedema in my arm but not hand immediately after my lymph node dissection but it was minimal. I started wearing a sleeve and then started swelling in my hand. It will never go away and is waaaaaay worse with a sleeve even if I wear my glove/guantlet either alone or both. After experimenting I quit wearing my sleeve and my hand is still swollen(size 8 ring finger instead of 4.5 as it used to be) but with the sleeve it is so much worse. I have the swelling in my arm but it stays stable. I am seeing a lymphedema specialist at johns hopkins in august to look into lymph venous bypass.
You may have the wrong level compression in your sleeve/glove. Not all can wear the same compression that most do. For some of us, we are very sensitive to pressure and too much will actually cause LE swelling.
I've been dealing with LE for 7+ yrs and absolutely can not wear any agrment that is not low (18-21) compression. My LE issues are with elbow area and a bit above and below and not hand - like you.
Long story shorter - my first set of sleeve/glove were medium compression. Within an hour of putting them on my hand (which had no swelling) had puffed up to looking like an 'over stuffed sausage". My LET guy said take off and don't wear. He ordered me a new set in low compression. Worked great - no hand swelling. About 1 1/2 yr ago, he thought might be a good idea to try a medium set again so he ordered a set. Wrong - within an hour of putting them on swelling was as bad as the first time with medium compression.
We are each so unique.
Like kicks, I need low compression (my fitter and I aim for 15-20). And have to have a one piece glove and sleeve with a body strap (I used to use custom jobst and now use custom gottfried)... any attempts at 2 piece glove/sleeve combo and my hand backs up right away. My upper arm backs up with any arm band.
For me, with my very active life, mostly doing 'outdoor things', I frequently have to take off my glove quickly to accomplish what needs to be done without dirtying, wetting or damaging it, so for me a one piece glove/sleeve would not work.
The only time I use a one piece glove/sleeve is with my Solaris night garment. Because it is a gauntlet style I find that using an opera length (above elbow) Isotoner glove under it works best. (My LET guy's suggestion) but I have to be careful not to pull it up too much/tight on my hand.
My day garments are Juzo Expert Cotton and HAVE to be Custom especially the glove thanks to having syndactyly. 1 in every 2,000 - 3,000 births will have syndactyly to some degree. It can be toes or fingers or both and in varing degrees. Mine is not extreme and I never really noticed it other than finding gardening, work, winter gloves was always hard to find that would fit. Always just thought that I had short fingers as the fingers of gloves were almost always too long and end 'folded over'. (Always knew that my toes were really weird as the 4 are really shorter than big toes and are 'stuck' together (webbed) more than 1/2 way but 'just toes' so no worry other than laughing at 'my silly toes' 😏.) So with custom gloves, it takes different measuring points to get the area that goes across between fingers with syndactyly to not cut into the webbing as a 'standard' measurement points do.
Of course, there are so many variables, in all ways, with each of us. I am blessed with a Fantastic LET OT guy who really sought out 'answers' for me.
Kicks, how did you find your fitter?
I guess I could say I don't have a 'fitter' that I found 'somewhere'. My LET Guy (an OT) is the one responsible for taking care of my LE issues and 'stuff'. He definitely does!
My care is through VA. All of my IBC TX was outsourced to the local Cancer Center but my LE TX is at my VA Center. So my fantastic LET Guy is at VA and it is his responsibility for my LE care and needs. He worked hard with me to get it figured out how to deal with my unique issues. Now he can just order 2 new sets of custom day garments every 6 months for me as the needed compression level and measurements are known.
Based on my experience with him, I have never understood others not getting what I get through VA. I can not understand just going to a Med. Supply and having a 'clerk' order.
After my first surgery I took myself to a top wound care doc & was diagnosed with mild truncal LE. I was sent to an independent LE treatment center for a compression bra & sleeves for flying. The owner (who is RMT, MLDT/CLT) is Vodder trained and a certified fitter for most of the major brands. Her prices for compression garments are very high so I bought one set there and ordered more off the web.
After my ALND the other side was more involved - truncal & breast. All my measurements & supply ordering are done by my LT/PT at MD Anderson and directed by my RO. I trust them both.
I've been to three different LE therapists. None of them have been any good. I gave up.
PLEASE DO NOT GIVE UP! It is your health and you have to be your best advocate. There are those who are knowledgeable and can figure out you personal issues, even if it take 'thinking out of the box". It may be not easy to find someone who can work with your issues and find answers. Yes, we are each unique but there are answers that can be found.
Kicks, I live in the middle of nowhere. It is a 50 minute drive to the nearest LE therapist (the one who thought a "journal article" was something published in women's day magazine, who started me on a class II compression sleeve right off the bat, told me I should wear it all day, and didn't put me in a glove until it was too late) and three hours to the nearest major medical center (not sure if they have a LE therapist, but the surgical oncologist there who did my surgery told me that I wouldn't get LE because I am short and not overweight, then didn't recognize axillary web syndrome when I presented with it a month after surgery). It's not like I can go to either place for routine care anyhow and there aren't other options.
Gokale. bumped this up for garment hunters
How do you know if you need a gauntlet or a glove? I currently wear a glove, but when I shopped online for a new sleeve and glove, I saw the gauntlets and thought they looked nice (and easier).
Diagnosed January 2017
Lumpectomy January 2017, 1/23 lumphnodes
Chemo: February 2017 - TC x 4
Radiation: June 2017
I didn't realize there was a difference. My gauntlet has been called a glove/gauntlet. Even the box has gauntlet /glove on the label.
GoKale, a "gauntlet" is a fingerless glove, while a "glove" has fingers stubs that generally go up to the top knuckle. Gauntlets are, as you noted, easier to wear. If you have swelling in your arm, but none in your hand, a gauntlet rather than a glove is an option to consider. If you already have some swelling in your hand, even if it is not yet in your fingers, a glove is the better choice. A gauntlet leaves open the possibility of forcing excess lymph fluid from the hand into the fingers, where it is harder to deal with. A recommend gauntlet is recommended for those women who do not yet have LE and are trying to lower their risk when working, exercising or traveling. Here's why:
But if you already have LE, and especially if it's already in your hand, then a glove is the way to go.
Hope that helps. Hugs,Binney
Then my gauntlet is a glove lol! I was calling it a glove but the PT and fitting specialist called it a gauntlet.
Yes, I thought "glove" and "gauntlet" were the same thing until I saw the pictures.
Binney4 - Thank you so much for the explanation. My hand is swollen so I will stick with the glove.
Super quick question for you le experts -
Does insurance cover gloves and sleeves? Namely blue cross... I've tried asking customer service and they don't know what I'm talking about and local vendors don't deal with insurance...probably for this reason. Just wondering if it is worth the stress of these horrible phone calls continuing...
Welcome cc. Don't give into their ignorance. Yes most do cover.
They may not know what your talking about unless you explain the equipment or devices you need.
My insurance booklet calls my sleeves and gloves "Compression hose."Try that.
Or you could say when you talk to them. Special elastic stocking for a leg for vascular disease which is similar to what we use in post cancer surgerys to prevent swelling.
Or say compression stocking because they took out my lymph nodes from breast cancer surgery and the compression stocking prevents swelling.
Or, it might be under section for lymph drainage machines.
Or under cancer section.
Or ask to talk to someone that handles the claims for special devices.
You may need a letter from your doc for coverage and he can explain your condition to ins.
Hope that helps and do let us know how it goes so we can also grow in knowledge from your experience. Two heads are better than one for sure when dealing with dang LE!
I know nothing about what insurance will or won't cover. My care is through VA and I get 2 new custom day sleeves and gloves every 6 months. Also got my night sleeve and they got my FlexiTouch and new garment sections when they wear out.
I normally/usually have no issues of swelling in hand or fingers (except when 'we' have tried heavier compression as I am very sensitive to compression level and swell up hugely within a very short time with anything more than low). I do have 1 gauntlet that I use when working the horses as it gives me a better 'feel' than a glove but if I wear it too long when not working them, I do get swelling in fingers.
For me, 'thanks' to my syndactly (somewhat webbed fingers) I can not possibly wear OTS (Off The Shelf) gloves. Without accommodation for the webbing, gloves literally cut the webbing between fingers causing a lot of pain and large open sores. There are supposed to be approx. 1 out of 5,000 who have syndactly to some degree - some milder and some severe. For me, fingers are moderate but toes are worse. There is a small amount of 'webbing' between fingers for everyone - that's not syndactly. For me, the webbing between fingers goes more than 1/2 way to the first finger joint.
Insurance has never paid for my sleeves & gloves. Maybe I'll try again using some of Hugz's verbiage. But I expect since I'm on Medicare, it's a lost cause. Great descriptions though Hugz.
Yes at times I have to be pushy with them and they only cover 500 bucks.
I needed a prescription from the Oncologist in order to get the insurance company to cover sleeves and gloves.