Compression sleeve leaving marks/flying to India

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netrajkr
netrajkr Member Posts: 45
edited February 2017 in Lymphedema

Hello,I am flying to a India next month to see my family ..I had mastectomy on June 24th 2015 with SNB ..3 nodes were removed all negative..No chemo or radiation..I need help regarding wearing compression sleeves and gauntlet..I am aware that are both yes and no for wearing them if you don't have any symptoms

My garments are from a trained fitter and fits well.My surgeon said not to wear .I went to a therapist here in CA where I moved 6 months ago.She checked my garments too and said they fit well.She said you don't have to wear but there is no harm if you decide it too.

My concerns are if I decide to wear:

I tried for an hour today .i found marks of the silicon band on the top of my arm and under my arm and a red line on my under arm .i found light marks where the sleeve ends and the gauntlet ends on my wrist as well as on my knuckles on the fingers and Very light on my elbow joint.Though ,I didn't have any discomfort or pain or irritations and they all went away in an hour .

I would be wearing the garments for more than 20 hrs if I decide to wear .I was not thinking to wear before but since it's a very long flight I am thinking to wear so I tried today but this marks are making me worried 😩 as I just wore it for an hour ..

Does anyone has some experiences like that? I called my fitter she said it's not a problem unless it's causing swelling or something.Is it okay to remove garments during flight if I am not comfortable? Or remove the gauntlet for washing hands as I will be using restroom a lot for drinking lots of water.

There are so many what ifs..I am traveling first time after surgery by air and two Very long flights .Though We did drive from Florida to California in last August.

My gauntlet and sleeve both are 20-30 mm hg from Juzo.This was prescribed by my surgeon in Florida


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  • ChiSandy
    ChiSandy Member Posts: 12,133
    edited February 2017

    I always remove the gauntlet for washing hands on planes. Marks are OK as long as they don't hurt or have swelling on the adjacent un-compressed areas. A lack of marks or lines may be a sign that the compression is too weak. I had 4 nodes out (also all negative) and my BS' NP had me fitted even before surgery. When I told my LE specialist that I'd worn compression for a transatlantic flight, he said “I don't prescribe compression for my patients who've had only 4 nodes out." But when I told him that I had experienced cording a couple of weeks before the trip, my rings were tight (those Juzo gauntlets didn't come far enough up my hand to cover the first knuckes—I have short fingers but long palms) in flight and that w/o compression I felt upper arm tightness at high altitude terrain, he changed his tune and even prescribed a glove for flying. He said I had stage 0 LE, but the therapist to whom he sent me said I had intermittent stage 1. The glove was completely uncomfortable for typing & playing guitar, and I found that LympheDivas gauntlets fit me perfectly.

    My LE doc recently examined and measured me and says I’m currently in remission from even stage 0, but to keep following precautions.

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  • pupmom
    pupmom Member Posts: 5,068
    edited February 2017

    Since you had nodes removed, you are at a lifetime risk for lymphedema. I went to India, Istanbul and Hawaii using the sleeves. I wore them when the planes took off and landed, then took them off during transfer times. We're going to London this May, and I am considering not wearing them. Will check with my MO first. Best wishes!

    Edit: I was in a lymphedema study since my surgery, and have no signs of the disease. That's why I want to be released from having to wear those sleeves. Once they're on it's ok, but getting them on and off is a real hassle.

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  • cliff
    cliff Member Posts: 290
    edited February 2017

    I am missing 21 nodes, and my hand and arm do swell. I have one gauntlet and two gloves, the latest glove has longer fingers. the gauntlet is easier to work with, but does nothing for "sausage fingers". I don't use the short finger gloves any more, the long works much better. the long finger ones extend to the farthest knuckle on my fingers.

    le gloves aren't very warm in the winter. my left hand is now 4xl and the right is 1xl size. I have one pair of biker gloves with Velcro across the back I can wear now, I do the lymph rub, and the wrap twice a week..

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  • netrajkr
    netrajkr Member Posts: 45
    edited February 2017

    pupmom wearing it on take off and on landing was suggested to you by doctor or you decided yourself.So you didn't wear it during the flight as I understand.

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  • netrajkr
    netrajkr Member Posts: 45
    edited February 2017

    Chisandy,that's really wonderful..keep doing what you have been doing.So ,if I decide to wear sleeve I keep it on all along even during layovers .



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  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited February 2017

    You should wear the sleeve & gauntlet for the entire flight. I do both arms since I had SNB on both sides. I put the sleeves on at home before I go to the airport. I put the gauntlets on after I'm seated on the plane. I take the gauntlet off when the plane lands so I can schlep my suitcases down the aisle, but do leave the sleeve on for at least an hour after landing. And if you're wearing a compression bra, leave that on for at least an hour too for your body fluids to equalize.

    Pupmom is right - you are at lifetime risk. You have to decide how much prevention you want to use, but once the LE progresses, there's no going back. Yes, you can treat it and hopefully the swelling will go down, but you can't make it go away. My LE is truncal & breast. I sure don't want it to get any worse in my arm (s) so I definitely wear sleeves & gloves for flying.

    As for the tightness, my last custom gauntlets felt like they were going to cut off my thumbs in the air. I spent the 4 hours flight taking just my thumbs out & putting them back in again. I was afraid not to compress, but didn't want to cut off the blood supply entirely.

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  • Binney4
    Binney4 Member Posts: 8,609
    edited February 2017

    netrajkr,

    You're so wise to be considering your risk and how best to handle it. One thing that may help as you adjust to wearing your compression garments is to apply a little cornstarch to the areas where you see irritation before you put them on. For ease in applying it, pour some into the toe of a clean cotton sock and close the opening with a rubber band. Use the sock to pat the cornstarch onto the places you need it--no mess that way. The cornstarch helps keep the garment from binding and irritating your skin.

    Begin now to work up to wearing your garments for longer and longer periods of time before your trip, increasing gradually, so you'll know how your body reacts over time. It does take some time for our bodies to adjust to this "second skin" experience!

    Even if you should decide not to wear your garments, do pack them along in your carry-on luggage. My hand lymphedema started on a flight to Alaska, where I was unable to find medical help. It made the visit in Alaska less than pleasant, and the trip home was a nightmare of sitting on my hand to try to limit the swelling (and, no, that sure didn't work very well!)!

    Since you still have family and friends in India, you may want to know about a new non-profit lymphedema advocacy organization, the India Lymphedema Foundation:

    https://www.facebook.com/indialymphedemafoundation

    They are working to bring lymphedema awareness and the need for treatment of lymphedema to both the public and the medical community, and to arrange for the training of more lymphedema therapists in India.

    Hugs, and happy travels!
    Binney


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  • Denise-G
    Denise-G Member Posts: 1,777
    edited February 2017

    I have full-blown Lymphedema. But that's not why I'm posting. I'm posting because of 3 women I met

    along the way concerning to wear or not to wear sleeves on airplanes and Lymphedema.

    Woman #1 - My Radiation nurse - was a 10 year survivor, 3 nodes

    out - decided not to wear a sleeve on a 3.5 hour flight - and BAM - full-blown Lymphedema.

    Woman #2 - Was a 2 year survivor - 2 nodes out - short 1 hour flight no sleeve, BAM, full-blown Lymphedema.

    Woman #3 - 8 year survivor, 6 nodes out - never any LE symptoms - one 2 hour plane ride and BAM

    full-blown Lymphedema.

    I'm always sharing those woman's stories because I read some doctors and therapists say no sleeve is necessary.

    Those women listened to that and were very, very sorry they did.

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  • netrajkr
    netrajkr Member Posts: 45
    edited February 2017

    Binney4 thank you so much ..I have read your posts before and they are very helpful and informative.So my concern is basically that these marks from the compression garments are not causing harm and as you said I'll try wearing it for longer periods .i didn't have any problem for 1 hour just the marks on my wrist and upper arm and on my finger knuckles and red mark only in my underarm of the band of the sleeve which all went away in an hour .

    So how long before should I wear and when to take off after landing .I might have a layover of 1-2 hours .So Just to make sure Once I wear before my flight from LA and then only I take off after I reach India ..

    Thankyou for the link ILF link ..

    One more thing how about sleep .Can I sleep ? As I might not be moving much thrn

    Thankyou so much all for calming my mind and helping me to decide .You all are amazing , hugs and love to you all.

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  • hugz4u
    hugz4u Member Posts: 2,781
    edited February 2017

    I always get marks but deep ones lasting hours with pain is not good.

    If inner elbow is rubbing then use Glide product ...an anti friction stick. Works great.

    Build up time wearing garments. One hour day one, two hour next etc.

    If gloves too tight then stick fat marker pens into fingers when wet waiting till they dry. This works great giving fingers a bit of stretch room.

    Drink lots of water in flight. Stick arm straight up and squeeze fists 25 times every so often. Walk often and stand at back of plane resting arm on something to avoid dangling to much. Deep belly breathes.

    Thanks Girls , didn't read your suggestions until after I posted. Good ideas


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  • pupmom
    pupmom Member Posts: 5,068
    edited February 2017

    I wore the sleeve during flights. I haven't been able to go on any trips for almost 3 years, due to my horrible orthopedic problems, so I haven't thought about it much. I will have to check into the procedures again, due to the upcoming trip to London. I do still have the sleeve, but not sure about a gauntlet.

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  • Binney4
    Binney4 Member Posts: 8,609
    edited February 2017

    netrajkr, I wear mine while I do the last-minute packing at home, because that often involves hefting luggage around. Then wear to the airport and until an hour or so after you reach your destination. You would not normally wear them at night when you sleep, but on a plane where you won't be thrashing about it should be fine. Remove your gloves or gauntlets for eating and washing hands. When you take them off be sure to put them in a safe place (purse, pocket), because they're easy to lose if you lay them down.

    Gentle frequent arm exercise, staying well hydrated, occasional deep breathing, and avoiding salty foods can also help.

    pupmom, if you haven't used your sleeve in a long time it would help to have a therapist or fitter check the fit to make sure it's still adequate. Also, here's information about why you need hand protection (glove or gauntlet) whenever you wear a sleeve:

    https://www.lymphedivas.com/en/hand-protection

    What amazing plans you all have! Enjoy!
    Binney

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  • pupmom
    pupmom Member Posts: 5,068
    edited February 2017

    Thank you Binney! I will definitely check out that link. I am so thankful I can finally travel with my husband again. He is a distinguished professor and goes to conferences all over the world. I've been trapped in my body until this year. Now released, YAY!

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