flying and lymphedema risk

Kira,

Your German Shepherd is a perfect picture for you! I was only speaking of my experience. Many women felt recon was the right thing to do for them...I did not get it. I also lived with DCIS for 17 years with no other treatment than small lumpectomy. My surgeons urged me to do a DMX. Did not get that either. Only last year a very small IDC appeared and I chose, for myself, did not listen to anyone else, to get a UMX. If I followed every link and every opinion about my health, I'd probably be bedridden. Use your own sense. The blog is helpful to get other opinions and experiences. I do not tell anyone what to do.  As far as facts go, everyone is different, everyone has a different story. I know my facts and I'm sharing them.

I've been offered a great professional opportunity that involves a very long flight. I have flown 6 shorter trips (3-6 hour flights) since I developed LE, each time wearing my arm Tribute and doing all of the "standard" precautions. I did swell a bit, but each time I think I got back to my pre-flight baseline. However, my LE has progressed since the last time I flew, and I haven't been able to get my current hand flare under control (been wrapping for 6 weeks to no avail ...)

It's not for a few months, but as the date gets closer and I face buying tickets, I am beginning to wonder if I am nuts to have accepted. It's a terrific opportunity, but not so great that I am willing to make my LE permanently worse.

For those of you who have LE and have taken a really long flight, how did it go? DId you swell? And if so, how long did it take you to get down to your pre-flight baseline?

Do you think it would be better to break the trip up into 2 legs (one 6 hours, one 12 hours), or to take a 14 hour non-stop flight? Did you bandage or did you wear daytime or nighttime garments? ANY advice would be greatly appreciated (including "don't go"). - KS1

Love all the advice, I have a trip coming up in April.  I've flown before without garments and was a nervous wreck, but have sinced joined the LE club.  Hope to get my compression garments soon.  I've been doing my clearing/MLD twice daily and its really helped.  

KS, keep us posted, your trip and new opportunity sounds incredible!! 

Hi all!  I'm new here to the lymphedema board.  I don't have lymphedema, and I'm so sorry for all of you who do.  I've heard it is very painful. 

I know basically nothing about lymphedema.  I am looking for some information relating to flying.  As you can see from my signature, I've only had 2 lymph nodes removed.  I haven't had any lymphedema, but I have dealt with "cording".  I will be taking about a 4 hour flight soon, and I really feel I should take precautions.  What do I need to purchase to use as precautionary measures?  And where do I find such items?  Is there a website that I can order sleeves and such from? Is this something insurance usually covers? Do I need to have a prescription in order to get sleeves and such?  Sorry for so many questions.  Thanks for any help you can offer!

Kira,

Thanks so much for the information!  It boils down to the fact my dear husband (who is spontaneous) booked a trip today for less then two weeks from now.  I don't have a lot of time to line things up, and really hadn't considered needing compression before now.  I'll maybe give my doctor a call and see what he thinks.

Thanks again!

Heather

LtotheK, that's sadly all too true -- no difinitive studies. Won't ever be, either, since you can't ethically set up a controlled experiment that would cover it, and there are too many complicating factors (did a women develop LE from the flight, or from hefting her luggage around, or from unusual activity on her trip -- rock climbing, say, or water-skiing -- or was it all coincidence?) There's a lot of experiential evidence of it as a risk factor though, which is where the guidelines come from.

If you use garments, they should be expertly fitted (that we DO know!) and not create a tourniquet effect at any point (say the wrist, or the upper arm band). There should be hand protection as well, to prevent any swelling from ending up in the hand, where it's especially nasty to deal with.

Strictly from personal experience, though, I'd like to add that if you're flying and you develop swelling, it can make a shambles of your get-away trip. So even if you don't decide to wear the stupid things, you might want to have a well-fitting set of them along for the ride, so you can get yourself home in comfort if you do develop problems. Finding a well-qualified lymphedema therapist is hard enough at home -- in a strange town or another country it's a nightmare. Unfortunately, I know that for a fact!

Faye, I love spontaneous! If you don't have time to get garments fitted there are still plenty of things you can do to promote lymph flow and protect yourself from problems. Enjoy!

Be well, and happy travels!
Binney

Thank you, Binney!  Never figured it that way, but of course.  I guess just studying trends is what they have to do with LE?

Blessings, I'm not an expert, but I will tell you what my PT would say.  The nodes are approximately 3 - 5% per node (I think that is exaggerated, personally, but better safe than sorry).  Your weight factors in.  So does having radiation, and chemotherapy, which both up the risk.  Cording is not definitively a risk factor for LE.  They aren't even exactly sure what cording is, though they have a hunch.

Sadly, swelling can happen any time after treatment.  There doesn't seem to be a high risk time limit.  Kinda like ER+ cancer.  Something we have to learn to live with.

They say short flights don't need it.  What would I do in your situation?  I would drink lots of water, do MLD, move a lot, eat low salt meals for a day before, and not wear a sleeve.  For the super shorties, the studies seem to indicate it's not necessary according to my PT.

Faye, no worries!  MLD is manual lymphatic drainage.  There are some really simple techniques, like stroking from collarbone to heart like a "cat".  A PT can give you advice on what is best for you!

Thanks so much for all the advice!

I have been reading all these posts and wondering too. I asked my MO about a sleeve and he said I didn't need it. I will be flying across country and then after a cruise back from Europe. I bought a couple of Armour underall compression shirts to wear on these flights to give me some measure of security,Several posters have mentioned them before. I did find that the men's medium fit better than the ladies large and I returned the ladies. I got one short sleeve and one long sleeve.

Dreamers, if you don't already have lymphedema and your doctor doesn't want you using compression garments, then your solution sounds very workable. Low salt, lots of water, keep exercising your arms and hands, and let somebody else heft the luggage around. Sounds like a fabulous trip! Bon voyage!

Joy, it's important to relax, so quiet music is nice, and a block of time without a lot of interruptions. As to position, lying prone is best, but my therapist always tells me that any way I'll actually do it is better than not doing it because I'm not in the right position. It's not easy to keep up with all this self care, so it's up to us to figure out what works for us personally. If doing MLD in a chair while watching TV is more likely to happen than lying down alone in your bedroom with a do-not-disturb sign on the door, then the chair is better.

Be well!
Binney

OK, here is my thought on this.

The problem with a regular sleeve you have never worn before is you don't really know how it's going to fit or how your le might show up. I was given a lymphedivas sleeve by sloan to wear "just in case" but it was nothing close to a proper fit for the way my LE showed up. Never worn it.

I like the silverwave bi-lat for a preventative sleeve, it's only 15-21 but it has these theraputic wiggles that a lot of us have found helpful. I wore them while I was waiting for my custom garments, and still wear them as night sleeves, (having flunked both wrapping and juxta-fit).

(I also use their stomach band for my breast le, and works well)

If I was going to wear a preventative sleeve that's what I would wear.

Really good points!

I defer to your judgement.

I found silverwave was the only thing that fit before custom, but I have to keep in mind I have a very atypical presentation, all in the upper arm.

The underarmor may be a safer bet.

For me it didn't work because it was too loose in the lower arm, but again my shape, (like a shakespearean sleeve puffly on top skinnny on the bottom) is the exception.

I recently bought a compression shirt from Astrosportswear Activewear (www.astrosportswear.com ). This is a company run by an entrepreneur and I believe she designs and sews the shirts herself. The shirt is 80/20 nylon / spandex, so pretty compressive. My Under Armours are 82/18.

Astrosportswear sells an off-the-shelf version with a nicely scooped neck--better for wearing under clothing with larger necklines. I found the shirt to be well made, although not as 'polished' a seamstress job as the Under Armours (visible just in the inside finish. Seams are serged, but not as industrial-perfect as UA's garments). The sleeves are laughably too long, and I wil be corresponding wtih the owner about that. Best thing:  price is only $25 and with standard shipping, $29.95.  I have a feeling that the owner, Kimberly, might well help out with a custom fit if asked, although probably for a higher price.  

I'll be flying again soon, and this will be my garment, with the UA in carry on just in case I'm not happy with it for some reason. I've worn it around home a few times with no issues, so I think it will be fine.

I have a sleeve/gauntlet, but I prefer the all-around compression of the shirt, because in addition to my very mild LE, I am also still recovering from post-surgical lipo and fat graft/breast revision surgery; the post-surgical swelling still comes and goes after 8 weeks and I'm told to expect it to hang on for some months more.  I have flown many times in an UA shirt and it does the job, so have been reluctant to change the formula, even though I know I can use a compression cami + the sleeve + gauntlet for my arm.  Sleeve/gauntlet travel with me in my carry on, and I do use them for exercising, but just hate to depart from what works while flying, at least so far.  I hope I'm not being head-in-sand about this!

And I do agree with Binney that it's quite valuable to hear what everyone else is doing to solve the puzzle that is LE.  LE does not seem to be 'standard' so surely the ways to deal with will vary, and we have some mighty creative women helping out here. 

Carol