flying and lymphedema risk

I don't have LE but I fly with a sleeve and a fingerless glove.  I don't remove my compression items until one hour after landing.  I also tend to get up 2 - 3 times during the flight and stretch my legs.  I also do arm exercises while seated - raising my arm above my head a couple of times, turning my neck side to side, up and back.  I just do this a couple of times each  hour of flying.

Mags, on the question of wearing a sleeve while exercising, the National Lymphedema Network recommends a sleeve and hand protection while exercising, for individuals with a diagnosis of LE.  Here's what they say about at-risk individuals: 

One study showed that aerobic and weight‐lifting exercise was safely performed without compression in women at risk for breast cancer‐related lymphedema. That study showed patients who developed lymphedema could continue to exercise with compression garments.

Individuals at risk for lymphedema may or may not utilize compression garments during exercise; this is an individual decision to be made with guidance from a care provider and/or therapist based on risk, activity, and conditioning level.

Individuals at risk for lymphedema will benefit from most forms of exercise tailored to their individual needs.

Individuals at risk for or with a confirmed diagnosis of lymphedema should avoid repetitive overuse of the affected part. Sudden increase in an individual's usual exercise duration or intensity may trigger or worsen lymphedema. It is likely that a program of slowly progressive exercise for the affected body part will decrease the potential for common daily activities to result in overuse.

If you have not already, you can read the full exercise position paper and other position papers here:  http://www.lymphnet.org/lymphedemaFAQs/positionPapers.htm 

With all those nodes out, good for you for taking precautions!

Carol

I fly several times in a year, and one of my trips takes around 15 hrs in flight, I wear my sleeve, but when I take it off, I massage my arm a lot, from the shoulder down my arm. Had 18 removed.

Susie, I'm kinda hopin' that Binney or Kira will drop in and give you some thoughts, but I can tell you that lots of women wear Under Armour compression shirts--long sleeve, a size smaller than you would normally wear, inside-out to keep seams from irritating you--while flying. 

There's controversy on whether to wear a sleeve or not, if you are 'just' at risk, but I don't think there's controversy on wearing some non-medical grade compression (i.e. the shirts). And certainly you can take deep belly breaths every hour or so, and put your arms up in the air and squeeze your fists every so often, both of which can help keep the lymph flowing. Never mind what your seat-mate thinks!

Carol

Susie, just make sure they're 'compression' fit, which uses compression fabric in addition to being very, very tightly sized.

...and it's QUITE the fashion statement when we wear it too tight, inside-out!  I wear it under a sweater or similar, but once the neckline was peeking out, and a TSA lady insisted I needed to remove my outerwear.  I asked for a privacy screening. 

Susie, LE can show up at any time. The NLN position paper on flying says, that as a person at risk, but no LE, it's a decision you need to make--it's not an absolute that you need compression.

For such a long flight, you might want to consider getting a low compression sleeve--15-20mm with a normal compression gauntlet--20-30mm

If you do get sleeve/glove, definitley try them out and make sure they don't hurt or trap fluid.

Here's the link to the position paper:

http://www.lymphnet.org/lymphedemaFAQs/positionPapers.htm

Good luck with whatever you decide to do, and definitely stay hydrated and raise your hands up and make a fist, every so often, to keep lymph moving.

Kira

This story popped up on my google alert:

http://www.abc-7.com/story/16557796/health-matters-traveling-with-a-medical-conditionHealth Matters: Flying with a medical condition

Updated: Jan 20, 2012 5:00 AM EST

FORT MYERS, FL -
Every year is a victory for breast cancer survivor Carol Thisted.

"I just turned 71 and I'm so happy I had another birthday."

She enjoys life, family and traveling despite suffering from lymphedema. An after effect from her cancer surgery, the removal of lymph nodes led to chronic fluid retention and swelling. It first appeared after a flight last year.

"I went on vacation in August and flew in an airplane and came home and I said to my doctor ‘my ankles are rather swollen and my arm is a little swollen too'," says Thisted.

Carol manages her condition with daily wraps and compression garments, something she has to consider when taking flight. Health conditions can spike at 30,000 feet.

"The pressures when you're flying are less, atmospheric pressure is less so you tend to swell more when you're flying," says Jackie Speas, a lymphedema therapist with Lee Memorial Health System.

"I'd be sure to wear my arm compression stocking and I would probably even wear some compression socks on my ankles and my feet cause they do swell also," says Thisted.

I know it's not a study, but just another story....

Kira

Do you know how to do lymphatic massage? That might be good to do while you are on the flight and again once you are off the plane to help the lymph system flow better. I'm flying in March for the 1st time since LE, hopefully all will go well.

I didn't fly for about 2 years after LE, but since then I've flown with the Solaris or wrapped, and it's been just fine.

Very liberating to get away, and realize it's possible.

Kira

Thanks Kira for the bump. My compression sleeve does not have a glove, nor is it custom made for me. They just took measurements and sold me a box 20-30 mmhg small. So now I"m worried wearing it without the glove will make my hand swell, even though I've never had a swell. I think I'll drive to Boston, 15 hours. I'm now scared to fly.

Rianne, plenty of people--me included--can wear off the shelf sleeves and they fit just fine. Since you've never had any problems with your hand, you can get a gauntlet--which just goes to the knuckles, instead of a pricey glove.

Please don't be too scared to fly: it is very doable, and you don't want to be grounded and driving in the car for 15 hours is a royal pain.

Here's a link to gauntlets, 

http://www.brightlifedirect.com/LYMPHEDEMA-PRODUCTS-Gloves-and-Gauntlets/c133_135/index.html

The NLN position paper says:

TOPIC: AIR TRAVEL

Air travel presents several considerations for individuals with lymphedema and for those at risk for
lymphedema. It is the position of the National Lymphedema Network that:

Individuals with a confirmed diagnosis of lymphedema should wear some form of compression
therapy while traveling by air.

Individuals at risk for developing lymphedema should understand the risk factors associated with air travel and should make a decision to wear compression based on their individual risk factors.

Please don't let this topic scare you or limit you--the attempt was to inform. I'm really sorry if I upset you or scared you. I got LE early on, within a month of surgery, so I fell into the first category and waited about 18 months or so to fly, and have flown several times since--wearing a night garment or a wrap--and it's been fine.

Heather: boy, you are low risk, the general recommendations are to move around, raise arms over head and pump fists, drink a lot of water.

Kira

Wow, that's great!  And you said that in February, you would be back in the gym. Just remember that you are at risk for LE in both arms, so if you are lifting you should use very very light weights at first and build up slowly and gradually.  The PAL protocol starts women with 1-lb weights. That's where I started, for anything upper body, following the protocol under guidance of my PAL-trained personal trainer. It felt and continues to feel very silly, because before my July surgery, I was lifting quite heavy weights.

However... I have mild LE in one arm, and some truncal LE.  That's a good enough reminder for me that I want to condition my arms and trunk in a way least likely to make my LE worse. So I just don't care what anyone else in the gym thinks when they see me with the tiny pastel colored dumbbells (I wow them with my leg presses....no weight restrictions there!).  

The recommendations for weight training are essentially the same whether you are at risk or already have LE, although wearing the sleeve/gauntlet while lifting is recommended if you have LE, and a judgment call if you are at risk.

So glad you had no flight issues!!!

Carol 

Rianne,

Do you want women to take risks without knowing the facts?

If a woman read your posts and flew without compression and got LE would you be upset?

We're very glad that you didn't join the "swell sorority", but several women on this forum did: Binney, Jane, Moogie--just to name three--they flew with low risk or compression and got LE from air flight.

So, while I know you're thrilled that you were able to fly, don't you feel the need to inform women, that this is just your experience and doesn't represent everyones? It such a well known risk that the NLN has a position paper about it.

Yes, there is a lack of studies, but there are compelling case histories of women who got LE after air flight, so all women at risk should weight the reality and the consideration of compression garments, and make an informed decision.

Kira