​No lymphedema, so why compression sleeve for air travel?

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited May 2019

    7of9, I'm a little confused. Did wearing a compression band on your last flight cause the mild swelling? Or are you saying it swelled because you didn't wear a band on your previous trips?

    This will probably be the last flight of my life and, after reading all the responses in this thread and doing research, I'm thinking of NOT wearing a compression band. SummerAngel wrote that she never uses one, and was advised by her LANA-certified physical therapist that she never recommends one for those who do not yet have any symptoms of lymphedema. I have no sumptoms.

  • ruthbru
    ruthbru Member Posts: 57,235
    edited May 2019

    Wearing a sleeve wrong (not having the correct size, not wearing a gauntlet with it, not putting it on long enough before you fly, or taking it off too soon when you land) can all lead to swelling. Of course, if you do have LE, it is worth the hassle. But if you don't, it's a matter of personal preference as to what you should do. Shortly after finishing treatment, I went through all the hoops the first time I flew. It was so annoying that I decided I'd just take normal precautions (which I've listed above) and deal with LE if it ever showed up. I fly quite frequently; and so far, so good. (Signing off to knock on wood!)

  • Anonymous
    Anonymous Member Posts: 1,376
    edited May 2019

    ruthbru, I've written down your tips as well as any other I've come across. I also like this one: keep your lymphoedema limb on the outside of the isle and move it freely. I always get a window seat...not this time; I'll get an aisle seat.

  • ruthbru
    ruthbru Member Posts: 57,235
    edited May 2019

    Yes, I always get window seat now for just that reason. Plus, since I am so well hydrated, I don't have to climb over my seatmates when I have to go to the bathroom!


  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2019

    I booked my ticket and leaving for Seattle on July 19th. I'm a little overwhelmed at the different opinions about wearing a compression sleeve and glove so I ended up calling the specialist at the hospital that gave me lymphedema training. Her opinion was that because I had so few nodes removed I didn't have to wear the sleeve and glove ($240).

    I'm glad because my darn round-trip ticket cost just almost $1000....I nearly choked. Then there's the charge of $30 a bag for luggage other than the carry on. And my shuttle round-trip ticket to and from the airport is $85!

    I don't have much choice of when to leave because my sister needs help after her double mastectomy and oophorectomy No time to worry about money, I suppose.


  • ruthbru
    ruthbru Member Posts: 57,235
    edited June 2019

    Here is an old post of mine, with some of my thoughts & tips on the topic. I put it together for an exercise thread, hence the emphasis on that; but you might find it helpful:

    I had 11 lymph nodes removed (12 years ago), so lymphedema has always been an area of real concern and mindfulness for me. When I had my surgery, there was no one around here to go to for advice, so I did a lot of studying on my own. Here are some thoughts & tips I came up with.

    First, I think that whether or not you are prone to LE has mostly to do with how your lymph system handles trauma. I would say most cases (unless you are in a horrible accident or are doing really extreme activities) are neither through any virtue or fault of your own; just a matter of good or bad 'luck'.

    That being said, there are many 'little' things that we can do that may reduce the risk of developing LE or minimize flares (these are for people with SNB too):

    • No BP, IVs, needles, shots etc. in that arm....consider getting a medical ID bracelet (to wear when traveling anyway). There are some really pretty ones out there that look like jewelry
    • Wear gloves when doing yard work, gardening etc.
    • Wear sunscreen when out in the sun, bug spray when out with the bugs
    • If you get a cut, scrap, bite...wash it with soap/water and slap on a bandage. If you see any sign of infection, get to the Dr. & on antibiotics ASAP
    • Be sure to switch arms when carrying your purse, hauling around anything heavy, dragging luggage etc.
    • Be careful about saunas, I avoid them, and also manicures and massages (on that quadrant of my body anyway).....not everyone does this, but that's just me
    • Keep a healthy weight
    • Keep hydrated, limit alcohol
    • Don't wear tight rings, watches, bracelets on that arm (when flying, I put my rings on my other hand & leave them on that side fro a couple hours after I land)
    • Also, be sure to keep well hydrated when flying, move your arm around a lot, make fists etc. get up & walk around the cabin (which won't be a problem if you are well-hydrated because you will have to go to the bathroom!), if someone wants to help you hoist your carry on & off the overhead, let them.....maybe think of checking a heavy bag (that's what I do)
    • When exercising that arm; start very slowly, take your time...build up weights very slowly...don't skip levels...don't do too many reps in one session. Mix up your exercises, don't work the same muscle groups every day. You may want to work with an experienced trainer (or PT) to help you construct a balanced program.
    • One thing I do want to add; after my surgery I was scared to start doing upper body. Neither my surgeon nor my oncologist could give me any good solid advice, so I talked to my GP. What he said was that I DID want to exercise my upper body, that it was important to do so as it would actually build up the lymph system, and although, of course, I should be careful and notice if my arm felt heavy/swollen etc. that I shouldn't be afraid to have it feel a little 'normal' soreness...because anytime you exercise a part of your body that you haven't been using for awhile, of course, it will feel sore. That made sense to me, and gave me 'permission' to get moving.
  • Micmel
    Micmel Member Posts: 9,450
    edited June 2019

    I wouldn’t even chance it. The pressure of the altitude is part of the problem as well the cabin pressurizes and you cannot control the pressure that is coarsing through your other nodes. It’s almost like an instant change of blood pressure for a short term time period of take off and landing. The other item is like someone had mentioned the additional movement and lifting of your arm, in positions It’s not used to being in. The third thing, is climate temperature changes. ie; from extreme cold or mild temps to a humid temperature suddenly, can also cause displacement of fluids. Swelling comes from humid temperatures. The other thing is injury, or jarring of any kind. If you get a scratch on a limb while away you’ll need then also. As protecting your arm from additional swelling or infection. Hiking and have no cover on it. You’re facing possible infection. Some people never have any problems. But I have known many many that have. Pack it just in case. It will start with a heavy tingle feeling. Good luck sweetheart!
  • OCDAmy
    OCDAmy Member Posts: 873
    edited June 2019

    I have been told by both my breast surgeon and my PS that if I don’t have lymphedema there is no need to wear a sleeve when I fly and I never have. No problems so far and I had 13 nodes removed.

  • Traveltext
    Traveltext Member Posts: 2,089
    edited June 2019

    viewfinder, there's no scientific evidence to support a person with treatment like yourself (with just a few nodes removed) having to wear to wear a compression sleeve.

    I fly regular long-haul flights without one and I've had an axillary clearance.

    Of course, the decision is yours.


  • jo6359
    jo6359 Member Posts: 2,279
    edited June 2019

    I am a registered occupational therapist and I do not recommend wearing a lymphedema sleeve unless you have signs / symptoms of lymphedema. I, personally, had a double mastectomy and 18 lymph nodes removed with one positive. I do not have any signs of Lymphedema. I fly frequently and many of my flights are long flights. If you notice increased swelling, increased pain or tightness then you could wear a sleeve as a preventive measure. If you have other medical issues which leaves you at increase risk for Lymphedema discuss it with your doctor or therapist. Also therapist have differing opinions, as well as doctors, on whether or not to wear a sleeve if you do not have lymphedema. Also, if it makes you feel better wear it. It isn't going to hurt you.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2019

    Thank you everyone for your very helpful advice. But, to be honest, I'm more confused than ever.

    I never had symptoms of swelling and I do wear a lymphedema armband. I've never had blood pressure, needles, etc. in my left arm since I've had my surgery. All my doctors have been informed of this and lord knows I've had plenty of blood draws this past year. I plan to faithfully follow the suggestions given by ruthbru before, during and after my two flights.

    I have no medical issue that leaves me at risk for Lymphedema. My lymphedema specialist told me I do not need a sleeve because I had so few nodes removed.

    I don't want to be penny wise and pound foolish, but I really find it difficult to spend $250 for something I'll only use once.

    Traveltext, what is an axillary clearance?

  • jo6359
    jo6359 Member Posts: 2,279
    edited June 2019

    viewfinder- I'm confused. If you haven't experienced lymphedema issues before with flying why are you concerned now? I still believe if you have no symptoms of lymphedema don't invest in a sleeve unless you're in a high-risk category.

  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited June 2019

    viewfinder,

    Axillary clearance = ALND, the removal of all Levels I and II lymphnodes. (Most people just get their sentinel nodes removed these days.)

  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2019

    jo6359, I have none of the risk factors outlined in this article - unless you consider that I had breast reduction surgery about eight years ago. I do not believe any lymph nodes were removed.

    "Some therapists feel that for these individuals, wearing a compression sleeve as a precaution could do more harm than good. But if you have many risk factors or you've had even subtle symptoms, a light compression sleeve may be a good idea."

    I've also had comprehensive genetic testing and, unlike my sister, have no gene mutations.

    To answer your question, I haven't flown since my lumpectomy. I haven't been in an airplane for four years. I had lymphedema education and the specialist told me to get my arm measured. That was about six months ago. However, when I called back last week an mentioned the high cost of the garments, the specialist said she really didn't think I needed compression garments. Maybe she didn't pay attention to my particulars when I met her the first time. But she reviewed them as we spoke on the phone last week.

  • jo6359
    jo6359 Member Posts: 2,279
    edited June 2019

    viewfinder- Now I have a more complete picture. Speaking as a therapist, based on the information you provided you would not meet the criteria for a compression sleeve. A light compression sleeve would not hurt but based on criteria it would not be medically necessary. Using it as a precaution measure differs amongst many lymphedema specialist. If you have slight swelling or increase tightness a person could consider a light compression sleeve. It can get quite confusing. My own personal choice, I'm in several high-risk groups for Lymphedema, I will not wear a compression sleeve unless I develop symptoms. Best of luck to you and whichever decision you make.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2019

    Thank you jo635. That's very helpful information.

  • Lezza13
    Lezza13 Member Posts: 957
    edited June 2019

    Jo6359 I have always worn a compression sleeve while flying just to be safe. I do not have lymphdema.. Recently I bought 4 the girls which is an alternative to the sleeve but still has heavy compression.. Do I need to wear one even for a long haul flight to Sydney from Florida next spring:? Or a flight from Florida to Londo. I had 23 lymph nodes removed. I would love your opinion. If I don't have to I'd rather not deal with the discomfort for several hours.

  • Binney4
    Binney4 Member Posts: 8,609
    edited June 2019

    Lezza and Viewfinder, there is no compelling evidence on this subject either way, so it's your call. Hopefully you already have a well-qualified lymphedema therapist who has done baseline arm measurements for future reference and helped with making sure any compression garments you use are an excellent fit (because if they're not, they can actually cause problems). Ruthbru outlined some strategies above you can use whenever you fly. Be especially careful when you're packing as well, since you'll be hefting heavy cases around then too.

    If you have no signs of lymphedema and choose not to wear a garment for your longer trips, Lezza, do pack them along in your carry-on anyway so you can be proactive about any problems that may develop. But if you have had any symptoms, including even slight swelling or feelings of tightness, it's time to see your lymphedema therapist and begin active treatment, because getting on top of it early is the best way to assure it will be easy to control and manage on-going.

    Happy travels!

    Gentle hugs,
    Binney

  • jo6359
    jo6359 Member Posts: 2,279
    edited June 2019

    Lezza- the decision is yours. If you have a lymphedema therapist, consult with the lymphedema therapist . If you have no history of lymphedema and no symptoms of lymphedema., I personally wouldn't wear it. I agree with Binny's comment above take it with you just in case. If you are having any symptoms of Lymphedema, you need to see a lymphedema therapist prior to your trip. I am not providing professional advice. If you have any concerns you need to see a lymphedema therapist and review everything with your therapist. It is best to do this prior to your trip. If you have heavy compression garments, did a lymphedema therapist measure you? Proper measurement is a must for a compression garment. If it isn't a proper fit it could do more harm than good. I repeat, if you have any concerns please see a lymphedema therapist prior to your trip.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2019

    "If you have no history of lymphedema and no symptoms of lymphedema., I personally wouldn't wear it. I agree with Binny's comment above take it with you just in case."

    So it looks like others are recommending to get a sleeve and glove...just in case. $240! Argh!

    I've been measured at a local store. But as I said, the specialist who gave me lymphedema education months ago said she didn't think I needed a sleeve based on having so few lymph nodes removed when we spoke on the phone about a week ago.

  • edj3
    edj3 Member Posts: 2,076
    edited June 2019

    Then at this point, you get to decide where your comfort level is with the chance of developing lymphedema. You've heard from both sides now, and you clearly do have reservations about whether you need this or not. Plus the cost is definitely a factor.

    Also wanted to say I like your C.S. Lewis quote!

  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2019

    You're right, edj3, I have to make up my own mind. I appreciate all the help and I don't think I'll get one based on my latest conversation with the lymphedema specialist.

    My favorite author is CS Lewis. I identify a lot with many of his writings.

  • jo6359
    jo6359 Member Posts: 2,279
    edited June 2019

    viewfinder- I was not recommending that you purchase a sleeve. If you have one then take it with you. If you don't already have a sleeve, only purchase one if you feel it will give you peace of mind. If your lymphedema specialist is not recommending one listen to the expert.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2019

    jo635, the advice you and others have been terrific! I appreciate it all and, as I've said, I'm not going to get one. Will use that money to eat at some of the great Asian restaurants in the Seattle area, assuming my sister is up to it. She's having a double mastectomy and oophorectomy the same day and, from what I've read, there could be a couple of months of recovery time. I don't drive at night, and prefer not to drive in Seattle where the traffic is grueling and roads unknown to me.

  • Lezza13
    Lezza13 Member Posts: 957
    edited July 2019

    Binney4 and jo6359/ Thanks for both of your responses. I appreciate the feedback. I have been wearing the sleeves on long flights as a precaution for 7 years now. I do hot have lymphedema. It's good to hear I do not have not. I now wear "For the Girl's a bra like compression garment I like better. A bit tight like a sleeve but more comfortable. I think I bring it/wear it for a long haul flight I have planned next year. Best of luck and thanks again/ This topic is why I visited this forum.

    viewfinder my sleeve was covered by my insurance. You might want to check into that. Just FYI You might also be like me and not have to wear one. I will now just bring it along for piece of mind

  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2019

    Lezza13, I've decided I'm not going to get a compression sleeve, which is not covered by insurance. My lymphedema specialist said I didn't need one because I had so few nodes removed.

    Once again, I thank everyone for their helpful input.

  • Lezza13
    Lezza13 Member Posts: 957
    edited July 2019

    vewfinder You can only make a decision for yourself. good for you. Best of luck to you.


    Best of luck to all. I appreciated the information on this thread.

  • LaughingGull
    LaughingGull Member Posts: 560
    edited July 2019

    To the original poster: who advised you to wear a compression sleeve when flying, and based on what evidence?

    I am at high risk for lymphedema, and both my MO and the lymphedema therapist I consulted advised against using any compression garments when flying. They said there is no evidence that it will help, and there is evidence that it can harm. But I didn't review the evidence myself.

    Can someone point to some paper, or some research results related to this?

    Thanks,

    LaughingGull

  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2019

    LaughingGull, When I had lyphedema education following my surgery, the specialist told me I should have my arm measured for compression sleeve. The specialist measured my arm as a baseline.

    A few months later I went to a special store when I knew I'd be taking a seven hour flight and was measured by the lovely shop owner. She said the cost would be $240 and not covered by insurance.

    So I called the lymphedema specialist again; she looked at my records and said I didn't need a sleeve based on the fact that I only had two nodes removed.

    Go figure.

    I've read a lot of the research and the recommendations are all over the place. I've decided to follow the recommendation of my lymphedema specialist, who is associated with our local hospital.

    Even the American Cancer Society doesn't say for sure....

    "lymphedema might be linked with air travel, possibly because of air pressure changes. But there are pros and cons to using a compression garment on long or frequent flights."

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