concerned about flying

135

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  • sas-schatzi
    sas-schatzi Member Posts: 19,603
    edited August 2014

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  • JWoo
    JWoo Member Posts: 1,171
    edited September 2014

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  • kcshreve
    kcshreve Member Posts: 1,148
    edited September 2014

    I rarely fly, but recently had several multi-leg flights and worried about my LE. I chose to wear Ted anti-embolism thigh highs on legs, in addition to compression shirt, compression sleeves on arms and gloves on both hands.  I have LE in Rt trunk and Rt arm.  I was pleasantly surprised to find I felt better overall by adding the thigh highs.  I'll do that again!  The Teds I had are not formal compression levels, so I don't know what they'd compare to, but now I'm going to hunt for some formal compression hose.  I put the set on 2 hours prior to flying and removed about 3 hours afterward.  I did feel very squeezed, which was a bit distressing after awhile, but in the end the result was very good.  Just fyi.

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  • carol57
    carol57 Member Posts: 3,567
    edited September 2014

    Well, hello kcshreve, it's good to hear from you!  I injured my knee and it was causing lots of full-leg swelling, so I bought a pair of 'formal' compression pantyhose from brightlifedirect.com. I also bought some thigh-highs, but I found that (after wiggling into them) the pantyhose fit, felt, and stayed in place a lot better. These garments were not terribly expensive, either, so I guess that's a plus.

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  • kcshreve
    kcshreve Member Posts: 1,148
    edited September 2014

    Waistbands really aggravate my truncal LE, so pantyhose are problematic for me.  Can you manage the tight waistbands?  As much as possible, I am in yoga pants for this reason.

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  • carol57
    carol57 Member Posts: 3,567
    edited September 2014

    Waistbands did not seem to cause a problem, but I find that after my diep, I don't have a waist, and snug waistbands are never a 'fit' problem.  I know that diep surgery rearranges the abdominal contours in ways that can differ from person to person, though. 

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  • glennie19
    glennie19 Member Posts: 6,398
    edited September 2014

    I am home and alive after HX. All went well. Some uncomfortable gas pain.  Back later. 

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  • Bren58
    Bren58 Member Posts: 1,048
    edited October 2014

    I am hoping some of you experienced ladies can help me.  I had ALND surgery about 18 months ago, and didn't really have any LE issues until recently. About a week ago, my arm started to just feel strange, not really achy or heavy. Well last night I noticed that I have an area that is puffy on the inside of my arm below the elbow. And of course I have to fly out tomorrow to be with my mom who is in the hospital. My upper arm also looks a little bigger than usual. I have a sleeve & gauntlet that I use for exercise and flying, which I will wear. Is there anything else I can do? My LE PT (who I have seen for cording issues) is out for 3 weeks for her wedding. I looked up the Michigan State video on doing MLD but am not sure if it is the correct method or if I should try to do it. Can I do more harm than good by trying? My PT never showed me how to do MLD because I never needed it before. Also I don't seem to be able to wear the sleeve for more than about 4 hours without my arm aching. Right now I am kind of in panic mode, because I am not sure what to do and cannot email my PT. Any suggestions would be greatly appreciated!

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  • glennie19
    glennie19 Member Posts: 6,398
    edited October 2014


    Drink lots of water, stay hydrated.

    Be careful with your luggage. Use rolling bags if you have them.  Don't pack heavy, and ask for help with lifting into overhead bins, etc. Be mindful of not straining your arm with picking up heavy things.  Try to get to the airport early and get thru check-in early,,, just so less stress for you. You won't feel so rushed/stressed.

    Raise your arm up in the air and pump your fist,, open and close your hand 10 times, to help keep the lymph flowing. Do this frequently. 

    There are some other threads on this forum about flying too.  Also over on StepUpSpeakOut, there is advice about flying also.     http://www.stepup-speakout.org/How_You_Can_Cope_with_Lymphedema.htm#Self-Conciousness_in_Public

    I would probably not do the MLD since you have not been shown how to do it.  I hope some of the other ladies chime in with advice for you too.

    best of luck, glennie

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  • crystalphm
    crystalphm Member Posts: 1,138
    edited October 2014

    You got great advice above, I just flew 2 10 hour flights after I had a bee sting...a long story. but wear your compression and be very careful about using that arm for moving or lifting your luggage. Check your luggage so you don't have to get it in the overhead bin, which is very stressful on our bodies.

    Drink, stay hydrated...carry hand sanitizer so you will feel clean when using the public toilets.

    Air pump your fist in the air, don't worry what others think.

    I am going to post more about my experiences...will do that right now under a new topic.

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  • Bren58
    Bren58 Member Posts: 1,048
    edited October 2014

    Thank you ladies. I have a small rolling bag that I am taking as a carry on. I don't want to have to check it because I need to leave for the hospital as soon as I land. Hopefully I can find a compassionate person that will put it in the overhead bin for me once they see my sleeve and gauntlet.

    Thank you for the tip about raising and pumping my fist. I am sure I will get some strange looks, but I really don't care.

    Hopefully it won't get worse before I can get in with a therapist.

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  • glennie19
    glennie19 Member Posts: 6,398
    edited October 2014


    Bren, good luck with your travels and best wishes for your mom's recovery.  I'm sure you will find a nice person to assist you with putting the bag in the overhead.   **I have a problem with my arm. Would you mind placing my bag overhead?**   There are lots of nice people in the world, sometimes you just have to give them a gentle hint to act.

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  • Zillsnot4me
    Zillsnot4me Member Posts: 2,687
    edited October 2014

    I told the flight attendants that I had a medical condition and needed to stay hydrated. I was given my own giant bottle of water. They took good care of me. I drank 60 oz water plus whatever drinks they served on roughly a 12 hour international flight. 

    Wore my sleeve, fist pumped, walked around. No issues. 

    If my arm is painful I take Advil. I also try to avoid salt. 

    Good luck on your journey and with your mom. 

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  • Bren58
    Bren58 Member Posts: 1,048
    edited October 2014

    Thank you for the encouragement and helpful hints glennie & zills. I'll let you know how it goes when I get back home.

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  • JWoo
    JWoo Member Posts: 1,171
    edited October 2014

    Hey ladies- 

    I am flying in a month to London and reviewing the SUSO info on everything.  I have sleeves and gauntlets, but am looking to get a Expand-A-Band© Breast Binder and full swell spots (i have it in my beasts and under the arm area). I just can't seem to find the perfect athletic compression top to wear and i am tired of looking right now. 

    My questions are:

    1: Do you think the EaB and SSp will work well to keep my FE from flaring on my flight and very active vacation I will be on in addition to my sleeve and g?

    2- do i need to get the full bra and lateral spots?

    3- do I order the EaB with the extra inches the swell spots add? ( I have a 40 inch chest right now, trying to loose weight, since the sizing for a large is to a 40 and the xl is 40+  which size  would work best?)

    4-  where the heck can you order swell spots from? are they very expensive?

    Thanks for any guidnace you can offer!

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  • glennie19
    glennie19 Member Posts: 6,398
    edited October 2014


    Hi JWoo,,,  I too gave up on finding a compression top and I use the "breast" Swell Spot and the Breast binder.

    I tried several different swell spots before deciding that the "breast" one worked the best for me. It covers my MX scar and reaches under my arm and gets most of my armpit,,, not all of it, there is one bit that it doesn't reach but it covers most of the area I needed.  I recommend www.lymphedemaproducts.com    for purchasing the swell spots.  I've had good service with them and the prices seem reasonable. The breast one was $44.90 and it is one of the more expensive ones as it is one of the bigger ones. 

    If your chest is 40" right now, I would go with the Large. You need a little bit of room for the swell spot but not as much as you would think.   And i do recommend the LINED breast binder. It is softer on the skin.  I was in between sizes too and EAB medical recommended going larger, but I think I could have gone with the smaller size.  What you may want to do is order one of each size and see which one works better for you. I'm wearing a medium now, and it tends to want to start sliding down and I have to tug it back up. So I am thinking of ordering one small and seeing how it goes. If it doesn't work with the Swell Spot, I may use it to wear to bed at night w/o the swell spot for nighttime compression. Ask them if you can order one of each size and return the one that doesn't fit in exchange for the one you need.

    Suggestion:  before you actually purchase,  if you can, ask your MD to write you an RX for the Swell spots and compression binders.  MAYBE your insurance will cover it,, maybe not.  I submitted mine,, got rejected (cuz it was an out of network provider) and then sent it to my health flex account for reimbursement.  It was interesting to learn that they would have paid for them if I had used an in-network provider. Too bad I don't have one of those! 

    Hope this helps!   Keep us posted.   glennie

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  • JWoo
    JWoo Member Posts: 1,171
    edited October 2014

    Thank you so much for your help Glennie!

    I have a call into my PT for a script for these items, so hopefully she can get it to the local LE shop and my insurance will approve it.  I am taking a non-stop flight from Austin TX to London, and really don't want to lug my pump around  for 2 weeks while we travel all over England, so if these work- it will be awesome!

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  • Bren58
    Bren58 Member Posts: 1,048
    edited October 2014

    Thank you everyone for your tips and suggestions. I wore the sleeve and gauntlet  a lot over the last week. Not just while on the plane but sitting around the hospital with my mom. I was very conscious about pulling the suitcase with the opposite arm and did find some kind people to put it in the overhead for me. I also did the air pump with my hand several times each flight. All in all I am happy to report that my arm is no worse and probably has a little less volume. Even though I am a year and a half into this LE situation I feel like it is a constant learning curve. I am so thankful for all the ladies on here that are always so willing help.

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  • glennie19
    glennie19 Member Posts: 6,398
    edited October 2014


    Bren, that's great. Glad to hear that your flight went well and that you are not having any flare-ups.

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  • JWoo
    JWoo Member Posts: 1,171
    edited November 2014

    Glennie- thanks again! your suggestions worked great for me. i only had one flare while I was trekking around England, which was my own fault (overloading my backpack without wearing my garments) but the flights were fine!

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  • glennie19
    glennie19 Member Posts: 6,398
    edited November 2014


    Love your new picture!  I'm so glad that you had a great time, and minimal problems !!!

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  • amygil81
    amygil81 Member Posts: 165
    edited November 2014

    Jwoo, nice to see you again, but sorry that it means you also have LE. I don't fly much, and my LE is one reason why. I've had it for years in my arm and hand, probably due to my crutch use. I wear a sleeve and glove during the day and bandages at night. I sometimes use a pump during flares. Glad to read you had a good time on your trip.

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  • glennie19
    glennie19 Member Posts: 6,398
    edited December 2014


    Flying tomorrow for the first time since being diagnosed with LE!  Glad it's a short hop!  Will be wearing sleeve, gauntlet and swell spot!  Will they let me thru security??  LOL!!

    See you all when I get back.

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  • sas-schatzi
    sas-schatzi Member Posts: 19,603
    edited January 2015

    bump

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  • crystalphm
    crystalphm Member Posts: 1,138
    edited January 2015

    How did it go? LOL, I wore compression on both arms, a compression cami and compression stocking for a long flight....I kept thinking my butt would explode out the back because where was all my lady curves supposed to go? LOL...

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  • glennie19
    glennie19 Member Posts: 6,398
    edited January 2015


    I'm home. It was quite the trip back. They cancelled my flight,, said the first flight I could get on was tomorrow morning,, which was not good!  So I diverted to nearby city,, rented a car with a couple of other passengers and drove home. Whew!  Wore gauntlet only on plane,,, I think the thumb is too tight, must get it looked at by my LE therapist. I wore my swell spot, breast binder and sleeve all the time while gone.  I didn't wear the swell spot thru security, as i was afraid it would flag me,,, so I just wore the breast binder and then I went in the bathroom and put on the swell spot.

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  • crystalphm
    crystalphm Member Posts: 1,138
    edited January 2015

    Glennie, I am glad all worked out well with the LE but sorry your flight had so many problems!

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  • glennie19
    glennie19 Member Posts: 6,398
    edited January 2015


    Thanks Crystal,,, my luggage and I made it home,, so that was the important part!!  It's all "swell".   LOL!!!

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  • Chloesmom
    Chloesmom Member Posts: 1,053
    edited January 2015

    Just posted about self treatment on airplane in " sleeves " thread. So many threads overlap wanted to share message with you all

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  • sas-schatzi
    sas-schatzi Member Posts: 19,603
    edited January 2015

    Chloe could you bring the link here?

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