Flying and wearing sleeve and glove?

I would put them on now to make sure they fit.  After you go through security you can put them on (it should be an hour before the flight).  When you get to Florida, leave them on for an hour after you land.  Or you could just bring them with you and put them on if you have a problem.  But if you have been told you should wear them everyday, I think you would be better off wearing them on the plane.  Just my opinion, hope others chime in.

I don't have LE but was told to absolutely wear sleeves and gauntlets on the plane. I recently flew on a trip to Italy and wore them and again to FL. They are a pain but I really feel they help. We flew to Las Vegas this past June and while there it was 100 degrees. My hands and arms got a litlle puffy and I had to go to PT to be evaluated. That alone scared me enough to take care and be cautious. There are so many on these boards that struggle with LE. I put the sleeves on at the airport under a lond sleeved top. I also remove them one hour after landing. It really isn't too bad~ you get used to them.

From what I've read, the issue of LE being triggered by flying is contraversial.  As is wearing compression garments if you aren't in acute flare, or are trying to keep it from happening in the first place.  My PT, a very competent person, said the choice was up to me.  Like so many things with BC, seems there are arguments for and against nearly everything.

For me, as a non-lymphedema patient at risk (6 nodes removed), I am not flying with a compression sleeve.  However, based on what you describe--you've had flares before--I bet my PT would suggest to go ahead and wear one.

The fitting is the key, as you are getting word here--if it's not fitted and worn properly, it can do more harm than good.  My PT suggested I wear it the day before flying as well, if I chose to go that route.

http://www.breastcancer.org/tips/new_research/20081212.jsp

At the NLN conference: Sheila Ridner PhD discussed lymphedema risk reduction guidelines, and said that as a clinician, when she's running a support group, and half the women in the room say their LE was brought on by a plane flight, she takes that seriously.

The debate is mainly about women at risk vs. women with LE--and as you have LE, it's recommended by the NLN.

Here's the most recent NLN position paper on flying:

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

For Individuals With A Confirmed Lymphedema Diagnosis

Regarding Compression Garments, persons with lymphedema should:

Obtain a well-fitted compression garment for air travel.
Obtain the garment well in advance of the trip and wear it several times to ensure proper fit and
comfort .
For most upper extremity lymphedema conditions compression of at lease 20-30 mmHg is
recommended.
For most lower extremity lymphedema conditions, compression of at least 30-40mmHg is
recommended.
A hand piece, either a glove or a gauntlet should be worn with the compression sleeve.
Place the garment on before take-off.
Leave garment on for 1-3 hours after deplaning to allow tissue pressures to equilibrate.

Regarding Compression Bandages

During air travel, certain individuals may require the added compression afforded by bandaging. These
persons should:

Be trained by a lymphedema specialist in appropriate bandaging techniques.
Apply the compression bandages before flying.
Leave the bandages on until you reach your final destination.
While away from home, continue your regular schedule of garment and bandage wear.

For Individuals at Risk for Lymphedema

Each person must make an individual choice based on risk factors associated with their own medical
history. The NLN recommends that at-risk individuals make an informed decision in conjunction with
their health care provider. If an individual choose to obtain a compression garment, follow the
recommendations as above.

For All Individuals Traveling

Regarding seat Assignment, Airport Regulations and Airline Choice:

Persons with lower extremity lymphedema should consider a seat with increased leg room, such as
a bulk-head or first class seat if possible.
A note from your physician regarding your lymphedema may help answer security questions
related to your bandages or compression garments.
Newer jetliners such as Air Bus, A380 or Boeing Dreamliners are able to maintain higher cabin
pressure with more humidified air, and may improve comfort.  

You can do what you want, but I've heard stories similar to KC, and Jane and Binney both had their LE start after air travel--the debate is for women at risk, not for women with LE. Moogie had hers start after a flight as well. Anecdotal, but who wants to take the risk?

I had a LE therapist tell me about a woman who started to swell in flight, and asked the pilot to lower the altitude and called her from the Atlanta airport in tears.

That study with the dragon boat women was poorly designed, and women who took the longer flight did develop LE. Otter interpreted the study:

http://www.stepup-speakout.org/research_updates_and_comments.htm#Compression_garments

Kira

MHP70, I'm one who was at risk and flew with a glove and gauntlet. I did so on the advice of an LE therapist. I had long flights and felt it was the safest thing for me to do.

The flights were 12 hours, then 1 week later 5 hours, then 10 days later 5 hours, then 5 days later 12 hours. This was a year ago and I still have no LE, though if it happens now I doubt if last year's flights would be part of the precipitating factors.

I suspect the fit has a lot to do with it. The fitter spent  lot of time with me and seemed to know what he was diong (though, really, how could I tell?). The sleeve fit snugly & comfortably but the gauntlet had to be exchanged since the first one was too tight (on that I could tell, purple fingers!)  I made sure to wear it for short periods of time a day before my flight. I also did the drinking/pumping my fist stuff that people here recommended.

My feeliing was that I'd rather have whatever inconvenience came with wearing it for the flight (which turned out to be zero inconvenience) rather than develop LE.

Hope this helps.

Leah

"I'd love to hear from folks who are at risk with no diagnosis and see what they did, too."

Well this dunce head flew with no sleeves or gloves or chest compression, because her equally dunce-headed breast surgeon told her she would never get LE with only two nodes removed from one side.

Well, as you all know, I now have LE in both arms, breast and chest.

If I could turn back the hands of time, I certainly would have worn compression garments on the flights, and maybe not have to wear them now everyday, together with night garments to sleep.

I had quite a vew discussions and arguments with therapists down in Orlando, and they all agreed that if the sleeve was properly fitted, you kept well hydrated, do your deep diaphramic breathing, reach your arms over your had and pump your fists every hour, you would be fine.

The problem is when you get a sleeve/gauntlet after your surgery, and three years later (who knows what kind of weight changes and dimension arm changes you have gone through, you will wear that same old sleeve/glove/guantlet without having the fit checked.

If you can get a 15 to 20 mg sleeve and gauntlet if you have no LE yet, they all agree that is the best.  Unfortunately I believe only Jobst makes this compression.

We have been after Juzo to make sleeves in this compression, since they are loosing and entire market share to Jobst.

If you already have LE, you need the 20/30 compression for both your arms and hands.  Or maybe higher--be sure to speak with your therapist.

BE SURE TO DO MLD AND CLEAR THE FLUIDS IN YOUR ARMS BEFORE DONNING YOUR SLEEVES BEFORE A FLIGHT!!  You don't want your arms to contain extra interstitual fluid and then compress that fluid into your garments.

Yup Kira, Sheila Ridner's comments each in my mind everytime this subject comes up!

I'm another one who got sleeves and gloves and wore them for my only flights since surgery.  I thought I was just taking precautions, and may have been at the time.  My arrogant surgeon was also a liar.  He told us that he had only removed "1 or 2 nodes in the breast tissue", when in fact, according to the path report I got a year later, I had axillary node dissection - 12 nodes on the L and 9 on the R.  He also told me there was no danger of LE.  What a jerk.  Anyhow, I had to insist on getting a prescription a year and a half later, so I could feel comfortable flying.  I practiced wearing them ahead of time, and I put them on after security, then kept them on for an hour or two after the flights.  I had no trouble.  I used the sleeves only occasionally, once in a while when I had done repetitive work like scrubbing the sink or tub...and then my arm would feel achy, tired, or full.  I'd put them on for a few hours, and things seemed to settle down.  I also wear them any time I know I need to lift heavy things.  I had to help my husband move my mother a couple of time last year, and I probably shouldn't have, but I did.  I'm glad I could do it for her, but I have recently been diagnosed with Stage 0 LE, so that may be the cause.  I finally got a LE Therapist and have learned, and practice nightly, MLD.  I am very thankful to these boards, because I would never have known how at risk I was and what to do about it.  I can't imagine risking LE when I didn't have to, just because I didn't want to bother with sleeves and gloves.  

I'll be having fairly extensive hand surgery in January, and the surgeon insisted I have MLD training before he would do the surgery.  He said, "You are 100% at risk for LE, and you will almost certainly have swelling after the surgery, so I want you to know how to take care of yourself."  It was the therapist who diagnosed me with Stage 0.  I'm still adjusting to the idea that I HAVE LE and am not "just" at risk.  I read every post here (have for over 3 years) and owe a huge debt to the knowledgable and caring women who post here and educate us and teach us how to educate others and defend ourselves.

Dawn 

Kira,

I'm with you 100% on risk-prevention measures.  When I met the hand surgeon in August, my first question was about LE risks.  I told him my BC/bilat mast/ALND history, and that's when he said I was 100% at risk.  Those people who know my risks seem to think I must have misunderstood my BC surgeon.  Unfortunately, he was and is just an extremely arrogant, uninformed, lying jerk.  At least the hand surgeon is really on my side, and I feel much more confident about going into this surgery.  

I have been following your progress with a great deal of interest, hoping that with the right kind of care, you will get past this nightmare and back to "just" dealing with BC/LE and all they do to us. Thanks for the many ways you have contributed to my LE education and for taking good care of yourself.  I know it must be very hard not working when so many people don't understand, but you are setting an excellent example for the rest of us, and I thank you for doing it in spite of the lack of support you've gotten!  

Dawn 

I am just amazed how many women have not been told of the risk for lymphedema! Not only did my surgeon tell me this risk he told me all the issues like numbness in my arm as well as even a risk for lymphedema by just getting the breast removed.

about 2 weeks after my surgery the nurse called to tell me there was a prescription waiting for me for my sleeve and gauntlet. It was recommended I wear it on planes. I also asked if I could have one for my other arm (sentinel node/4 nodes). She did without question. Even though my risk is considered lower because I'm thin my doctor still wanted me to wear the sleeve AND gave me a print out with more information about lymphedema and how to proactively protect its onset.

And other important question:  in that study, why do they not list how many nodes these women have had taken?  That is super crucial info, it should have been part of the whole assessment. I'd just about throw the whole study out, surprised no one mentions that.  Or do I read it wrong?  Perhaps they all had axillary dissections?

BoobsinaBox is cracking me up!  I am going to call my PT today and get a consult.  For goodness sake, why are we all so much better educated on this than our doctors????

My massage therapist said that nodes are variable, but only up to a point.  It's safe to assume most people have up to 24, approximately.

Decisions: chemo, no chemo (did that), Tamox or AI, sleeve, no sleeve, dairy, no dairy, soy, no soy--this is funny farm making material.

I made an appointment to go to the original PT, armed (pun intended!) with all this information, and see what she says.  I will report back to all of you so that we can contribute to new patients slogging through this awful unknown.

In reading further on LE, with every flare comes damage to the tissue.  Why these idiotic doctors don't take it seriously I can't understand.  Mine said he absolutely sees it, he wouldn't deny it.  When I had cording, he had no idea what I was talking about.  Thanks to this board, I knew exactly what it was, and was able to be proactive. My massage therapist, in my mind, saved my arm from further damage by intervening early.

Well, hey! That was good news! Did she take arm measurements for future reference?

You don't mention a glove or gauntlet to go with your "stylish" black sleeve (I have some black ones too -- they actually get compliments from people who have no idea they're not my choice of accessory!) But hand protection with a sleeve is yet another great idea for protection. Here's Dr. Andrea Cheville's recent article on why hand protection is smart:

http://lymphedivas.com/lymphedema/gauntletandsleeve/

(I wish to heck they'd quit with the black page background -- always makes my head spin when I try to read it!)

Have a great Christmas trip!

Ho! Ho! Ho! and all that,
Binney

Barbara, what a bummer!

If you're asking whether the swelling is permanent, the answer is most likely not, with good treatment and self care. But if you're asking if the lymphedema is permanent, then yes -- it's chronic and will need your attention always.

The standard therapy involves two to four weeks of daily MLD massage and wrapping by the therapist, while s/he teaches you to do both of those things yourself. S/he should also have taught you some exercises and how to care for your skin, which are also part of our self-care routine. After the therapy sessions you should be fitted for a glove and sleeve, and the fit checked so that it's neither too tight nor irritating to any part of your skin.

In your situation on the plane, you were right to remove the glove that was turning your fingers purple, and you might have added some on-the-spot self-MLD and some exercises to help control the swelling if you know how to do them.

It doesn't sound from your post like you were taught all the skills you need for self-care. You might want to get a second opinion from a new therapist who's fully trained. Here's information for finding one near you:
http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm

Lymphedema is a steep learning curve, but once you have all the "tools" you need to care for flares like this one you'll have everything back in your own control!

Keep us posted!

Hugs,
Binney

Barbara, flares are so distressing. They really topple our sense of ourselves and our freedom to do as we please. They're plain ugly whenever they appear!

You'll get this one under control again -- next time you fly, though, you might want to wrap instead of just depending on the garments. A hassle, but it makes for better memories after the trip!

I sure hope your consultation goes well and is reassuring. Being up in the air is always so stressful, but hopefully getting the information you need to make a firm decision one way or the other will bring some peace. Do keep us posted.

Be well!
Binney