Lymphedema caused by flying?

I flew 2 short trips after surgery and didn't have a problem.  But I did get a sleeve and gauntlet to be pro-active. My logic was: an ounce of prevention,,,

I ended up getting LE,, but it wasn't due to flying.

If you DO have LE, then you need a sleeve AND gauntlet (just a sleeve will make things worse); if you don't have LE, then it is debatable as to whether you should wear one or not. I, personally, do not wear one (I do not have LE), but I make sure I am very well hydrated before and during the flight, I wear loose clothes, no tight sleeves, no rings or tight bracelets on that arm, I make fists a lot, move my arm around, and get up (and go to the bathroom from all that fluid) during the flight. If I have a heavy bag, I check it. For a carry on, I switch arms a lot if I have to drag one through the airport and  I 'let' people help me hoist it into the overhead bin & get it down..... so far, so good.

those who have LE... do you wear gloves and sleeves on both sides or just the side you have LE?

mcgis - I have diagnosed LE on the ALND side, but I had a 2 node SNB on the other side and have experienced some swelling, although I am undiagnosed on that arm.  It is less problematic than the other arm, but I do wear bi-lateral sleeves/gauntlets when I fly, go to the gym, or do any strenuous activity.

Please read http://www.stepup-speakout.org/Controversial%20St... from the Stepup-speakout website for more information on the controversy on wearing compression garments on air flights.

My lymphedema started after an air flight.  

I believe wearing well fitted compression garments is "insurance" for those at risk for lymphedema and a necessiity for those with established lymphedema.

Mariasnow, please  tell us more about the "conclusive" study you are referring to.

tanga - I get mine from a medical device company locally and it takes about two weeks for them to place the order for non-custom sleeves/gauntlets, but some people get them fitted and ordered from LE certified therapists.  If you ask your center they may be able to tell you who you can see.  It is important that your garments be properly fitted.  Because I have diagnosed lymphedema my insurance covers bi-lat garments, and some may cover them for preventive use.  Check with your insurance company on their policy for compression wear - one set of the sleeve/glove combo for me is about $125.

You definitely need to be properly measured for the sleeve/gauntlet. We have a medical supply store here that carries them in stock. Just the plain beige ones, but that is good for a start! ( I have different colored ones now)   Check your local medical supply store or check with your MD to see where you can get a proper fitting.

Excellent!! Best of luck.

Maria, ouch! I'm sorry you're feeling attacked and hope you'll continue to share both information and your own experiences, as it certainly concerns all of us for the rest of our lives.

You brought up a good point: there are studies from Australia debunking the idea that air travel can cause or exacerbate LE. Unfortunately, they're seriously flawed--the StepUp-SpeakOut page OneBadBoob links to above explains why, for anyone who's interested. Here at bc.org there are lots of ladies whose LE started in flight (me, for one!) Unfortunately I was on my way to Alaska at the time, a small coastal town with no LE therapist within several hundred miles--one of my more memorable vacations, just not in a good way! So like others here who have developed LE while flying, this is a subject some of us have serious regrets about. I will never stop wishing someone had told me to wear a well-fitting sleeve and gauntlet.

But I especially like your point about LE being "extremely challenging"--for sure! We all make our own compromises with the endless demands of this condition, based on the best information we can get and our own capacity to cope, which sure as heck changes with time--sometimes for the better, sometimes not so much. However you slice it, this is rough. Chocolate helps!

Gentle hugs,
Binney

What is myofascial release? Does it help lymphadema?

Crystal, good point! It does help to know the old terms for LE so you can ask about your own family history. Milk leg is one term, and another that was common is dropsy. We sure have come a long way in knowing how to care for this--wow! Long way to go, sure, but well worth taking a moment to be grateful that we know how to control and prevent the weeping skin and constant infections that used to be the usual course of this rotten condition.

Happy travels!
Binney

I was considered low risk too.  I only had 6 nodes removed and I'm thin.  I didn't develop it from flying, but I ended up with it, mostly truncal and mild upper arm at this point.  There are a lot of other things you can do to reduce your risk as mentioned on the other posts, pump your arm above your head, drink lots of water, etc.

I choose to wear a sleeve and gauntlet (important to do both if you are going to do this) based on what I read here and on the Step Up Speak Out website. To me, it was an ounce of prevention.  I have not actually read of the sleeve CAUSING LE,,, except maybe where a sleeve was worn w/o a gauntlet, then you run the risk of getting it in your hand. Short flights are less of a problem than longer flights too.  Keep reading,, hopefully some of the more experienced people will pop on too. I've only been dealing with LE since March.

If you do decide to get garments, just be sure to go to an experienced fitter and get properly measured.

Carol, so far I have no symptoms that would make me believe I am developing LE. I am only 5 weeks out from my double mastectomy so I have some residual swelling and numbness from that, but my lymph nodes came out in January and I have worn my wedding ring and watches without any issue this whole time and didn't have any issues before the bmx.

coffeelatte, having mild lymphedema sure doesn't mean you don't treat it! Are you certain that the PT you've seen has training and experience treating LE? Not even measuring your arms sends up a huge red flag to me.  Even if the measures verify that your LE is stage 0, with no visible swelling, you need some accurate baseline measures in your record so you have something to compare to and can catch visible swelling as soon as possible.  If you had a compression sleeve and gauntlet, you probably would find that wearing it helps reduce the burning, aching feeling. And if you learn to do manual lymph drainage, after some professional sessions by a qualified LE therapist, you can reduce some more of that by moving the lymph out of the affected areas.  

For your side chest, you might try wearing a compression T shirt, such as those made by Under Armour.  It's best to try these on at a sporting goods store--definitely check for 'compression fit' -and try on both women's and men's sizes to see if you can find something that provides strong compression without cutting into you at the seams (wear it inside out to help with that).  Or, look for shapewear; there some that have sleeves, which I find helpful because it compresses my underarm area. A shapewear cami might help, if it's cut high enough to cover the side chest that bothers you.

My LE is quite mild, but I sure do feel the aching and burning.  I find that wearing a lymphedema night garment--I use a Solaris Tribute--really helps to tame the LE symptoms as I sleep.  It's an expensive custom garment, but they make one called Caresia that sells in off-the-shelf sizes and you apply just a little LE bandaging over it to make it conform to your shape. These are products that a good LE therapist should be suggesting to you, and helping you to get a prescription if you've got insurance that would cover something like this. I find that by wearing the Tribute at night, I'm good to go for most of the day, and the arm starts to really bug me in the afternoon and evening. I wear my compression sleeve and gauntlet for any serious activity, including going to the gym, gardening, etc., and when flying.  And I often put it on when I'm playing with my grandchildren, because like you, I want to be able to lift them when needed or just for fun.

Wearing a sleeve isn't all that's needed to be able to lift your granddaughter without triggering a swelling flare; you need to be sure you've got some strength to be able to lift the weight without sending your lymphatic system a distress signal that triggers release of more lymph. That's what LE exercise guidelines are all about--explaining an approach to strength training that encourages your arm to develop strength very slowly.

All of this is a lot to think about, and to me, the first step is to question the qualifications of your PT and try to find a more qualified resource if that's appropriate. As you work on that problem, I hope you'll spend time at stepup-speakout.org, where I suspect you've already visited. The garment information is priceless, and so are the suggestions for finding a qualified therapist. In due time, the site has exercise guidelines for you, although it's best to stabilize your LE--no changes for a month or so--before starting a strength training program.

I'm not at a computer so link-dropping is cumbersome, but I'll watch this thread, and if you need some help finding the right pages on SU-SO, ask for that in a post and I or someone else will line them right up for you.

My final thoughts:  you can, and you will!  LE is frustrating and can be depressing, but once you get on a good evaluation and treatment track, you will gain some positive momentum and have some good tools to use to help reclaim your active life and be able to do all the wonderful things we do with our grandchildren. 

Hugs, hugs, hugs--it will get better.

Here's one of the links from BCO that I read:

http://www.breastcancer.org/treatment/lymphedema/a...

It didn't help me one way or another though, because like you say, there doesn't seem to be good evidence to back up some doctor's opinions on this. So frustrating!