Compression Sleeves for Lymphedema

[RobinP]

I'm finally going to fly after not flying for years since surgery. We're planning a trip to Disney! Where do I get the compression sleeve to help prevent lympedema while in the airplane? Thanks!

[tousled1]

I had my surgeon write a prescription for mine. I got mine where I got my protheses. I was measured for the sleeve and they do come in different compressions. Once you know your size and compression you can order them online or get them at a good pharmacy.

[RobinP]

Thanks Kate. How does your arm feel when flying? Should I expect some heaviness or irratation or will it feel fine while flying? Also, should I opt not flying due to lymph node dissection or will I be perfectly safe in the compression sleeve? I haven't had any lymphedema issues since the noda dissection and don't want to ever get any either.

[tousled1]

Robin,

I had 26 nodes removed on the right side and one on the left side. When I fly I wear a sleeve on both arms. I actually only have to wear it on the right arm but I want to make sure I don't develop lymphedema in my left arm, hence the reason I wear a sleeve on both arms. You will be fine flying with the sleeve on. You won't even know it's there. Have fun!

[RhondaH]

curious...how many nodes did you have removed? I only had 6 and didn't think I would have a problem w/ lymphodema and ironically enough the end of Feb when Tony and I flew down to Disney, my arm got tight and achy and NOW since then, I have been experiencing lymphodema (I'm quite sure it is as I have all the signs and when I lay on the affected side, the pressure helps it). Take care and God bless.

Rhonda

[Mary Jo]

Thanks Rhonda...........you read my mind. I was going to ask a question about compression sleeves as well. I had 2 nodes removed and radiation to that area as well. I do not have lymphedema and no one has ever mentioned to me that I needed to wear a compression sleeve if I flew. I was told that I do have a risk of lymphedema since 2 nodes were removed (minimal if it were only the 2 nodes) but since the area was radiated the odds are a bit higher that lymphemdema could occur. It's been almost 2 years and have never showed any signs of lymphedema.

I'd appreciate a clearer understanding of this issue.

Mary Jo

[tousled1]

What I was told is that if you've had a mastectomy you are more at risk of developing lymphedema no matter how many nodes you've had removed.

[Lolly]

I think it's the combination of surgery and rads which is more of a risk for developing lymphedema(especially rads), just based on my experience...I had mastectomy, 5 nodes removed and rads to left side after diagnosis of primary disease, and developed lymphedema on that side 6 months later. Several years later(in 2002)I elected to have a mastectomy on the right side with only one node removed, and my right arm has been normal all this time even after flying to Hawaii from Oregon(no sleeve on right, just left). I had to have rads to the right axilla and chest last fall due to spread to axilla nodes, and suddenly this spring I developed lymphedema in the right arm, so I believe in my case it's due to the radiation damage to the nodes combined with active cancer in those nodes affecting their ability to drain...

<3 Lolly

[RobinP]

Thanks, Rhonda, your story is scary. Did you wear a compression sleeve when you flew? From what you wrote, it sounds like you didn't. I wonder if your outcome would have been different if you had. I wish you the best with your arm and hope it improves.

Mary Jo, I was not told by my physicians either to wear a compression sleeve during flying. I only learned this by the Her2 boards and reading what Becky had to say about flying and compression sleeves a while back. Sometimes I wonder what good doctors are anyway. You would think they would better educate their patients, but that just doesn't happen.

Okay, folks, after Rhonda's story I am officially concerned about flying. I did have seven nodes out and my surgical arm is sensitive to over-use and abuse. For example, I have to limit how much I can carry or it aches and feels heavy. Well,
any comments on this topic are greatly appreciated. By the way, I am also taking a cruise with the Disney trip. As far as I know, there are no problems with cruising with lympedema...right?

[RhondaH]

no, I did not wear a sleeve, no one mentioned it to me, but I will talk to my onc about when I see him the first of June. You'll be fine if you get a sleeve. Take care and HAVE FUN...we did!

Rhonda

[RobinP]

Thanks for the thumbs up. Rhonda. You;re right, I should do the compession sleeve, fly, and have a good time at Disney.

[StephN]

Yes, Robin - listen to Rhonda and the rest of us who say to get the appropriate sleeve, wear it, and have a grand time!

I had 15 nodes taken from my lower axilla and that is in 2000. I have flown all over the world since then and not till 2002 did I have a sleeve that I "inherited" from a friend. Only wear it on the plane trips. No problem with my arm.

Last year I developed a slight case of lymphedema in my right hand, and have a glove for that which I seldom wear as normally there is no fluid retention as I do the manual lymph drainage fairly often.

[RobinP]

Thanks, Steph, you and everybody here are making me feel so much more comfortable about flying. Thank you so very much...big smile.

[dlaxague]

Oh man! I just typed a long reply and lost it when the list-bot said something about an invalid thread and logging in (although I was logged in already). Sigh.

Maybe I can be more succinct in my second try.

There are two schools of thought among the experts, regarding compression sleeves for at-risk arms. Some maintain that the sleeve is a bad idea because it interferes with lymph circulation thru the tiny and delicate vessels that lie right under the skin. Again, this theory applies only to unswollen but at risk arms.

Supporting this theory would be a study done in Australia that found no link between flying and lymphedema. I am not aware of any study that does link flying to onset of lymphedema - most of that information is anectdotal.

I suspect that part of the problem with flying is the immobility and perhaps the unaccustomed and/or prolonged weight bearing that often accompanies travel. The immobility can be remedied with or without a sleeve, by getting a seat that puts your affected arm in the aisle, and moving it around a lot, "wringing it out" by twisting at the wrist, etc. If you do wear a sleeve, be especially careful to keep that arm moving - the compression is intended only for an active arm (for example you do not wear a compression sleeve while sleeping). Also watch for any signs of hand swelling and remove the sleeve immediately if you notice that.

The NLN (National Lymphedema Network) has done so much work to advance knowledge and awareness about lymphedema. In the US, we would be much farther behind if it were not for them - I do not mean to knock them. But there just isn't enough evidence-based information about lymphedema, yet. Most of the 18 edicts about prevention are not evidence based, and some of them are being overturned as studies are done. For example, several studies have shown that repetetive motion, when begun slowly with gradually increasing intensity, does not increase lymphedema (studies on dragon boaters who row and lift weights).

The best thing is for everyone who's had lymph node surgery to schedule a visit with a certified lymphedema therapist. That visit would include baseline measurements, education, and instruction in exercise and self-massage. I have a little exercise/massage drill that works wonders. When I first developed my mild lymphedema, I did wear a sleeve. But over time I realized that it didn't really help that much. The exercise/massage drill, when my arm is bothered, helps a lot.

If your insurance will not cover a visit to a therapist, because your arm is not actually swollen, look for a class or support group about lymphedema at local facilities. Some will be presented by physical therapy departments, others at cancer centers. Education makes a big difference. You'll know what to watch for, what to do if you think you've annoyed your arm, and where to go if you do have trouble.

This is still long. Sorry, but as you can probably tell, it's a favorite subject of mine.

Debbie L (carefully copying this post in case it doesn't go thru on the first try)

[Becky]

Dear Robin


I live on airplanes weekly flying all over the USA, Canada and Mexico. I am one of Continental Airlines most favorite people in the world.

I got a sleeve from the get go and replace it 2X per year (because I use it so much). I do not want to get lymphedema from flying (and my girlfriend did like Rhonda). It can happen to anyone who has a compromised lymph system. Some people can have 30 nodes removed and have radiation and have no problem and another person can have one node removed and have a huge problem. You just don't know.

I get my sleeve at a pharmacy that also specializes in masectomy bras, prothesises etc.

I always wear my sleeve when flying. Proper protocol is to wear it on the flight and just as many hours after the flight as you were in the air (ie: if you are on a 3 hour flight, you need to wear the cuff for 3 additional hours on the ground after you land - I always check my watch as we are taxiing down the runway to take off and then again as soon as we land because I don't want to wear the cuff one extra second than I have to). Another "rule" is that by no means are you to sleep with it on if you need more "ground time" hours. Just wear it then as long as possible. For example, you might fly to California and it is 5 hours in the air but you took a really late at night flight. So, after about 2.5 hours on the ground you need to go to bed, get ready etc and take the sleeve off and go to bed. You can go on the lymphedema network site to verify.

I did fly once without my sleeve. I ran and caught an earlier flight from Chicago to Newark. Broke up my whole routine. When we were about to land I looked at my watch and realized I never put the cuff on. All was fine but I just don't want to take anymore chances because I fly all the time.

Hope this helps

[Sheila]

I also was told to wear a sleeve when flying, and I always have. I was measured and fitted for one at a drug store that did mastectomy products. The sleeve arrived in a week. I also replace mine at least 1x per year...I don't fly as much as I did when I was working. I had 19 nodes removed, all negative, so I am extra careful. The neatest ones I've seen are from a company called lymphedivas....Sandy, you would like these!

http://www.lymphedivas.com/

[dlaxague]

"Is There an Increased Risk for Developing Lymphedema during Airline
Travel? Susan R. Harris, Ph.D., PT, School of Rehabilitation Sciences -
UBC A single article published in 1996 suggested air travel might
increase the risk for development of upper extremity lymphedema in women
at risk.1 As a result of that paper; many women have been advised by well-
meaning physiotherapists and physicians to wear compression sleeves as a
preventive measure. A recent, more rigorous study has dispelled that
myth.2 A sample of 287 women who had been treated for breast cancer were
surveyed about their airline travel since completing their treatments
(from 4 months to 9 years earlier). Approximately half of the women had
flown since finishing their treatments and of those 27% had completed
overseas flights.




Happily (for all you frequent flyers!), there was no significant
difference in the rate of lymphedema between the women who had flown and
those who had not flown. None of the women who had flown reported new or
increased permanent arm swelling after flying, although nine (6.3%)
reported temporary swelling. Another interesting and unexpected finding
was that the women who took "precautionary measures" before flying (most
often by wearing a compression sleeve) had a higher rate of permanent or
temporary swelling.




As the author of this article concluded: "It is clear that unprotected
domestic flights (typically 4.5 hours or less) are not the serious
hazards that lymphoedema pamphlets and organizations would have women
believe. No woman in this series experienced permanent swelling as a
consequence of flying, whether domestic or international." 2 The author
stated further that "compression devices are possibly counterproductive"
during air travel.
1. Casley-Smith JR, Lymphedema initiated by aircraft flights. Aviation
Space and Environmental Medicine. 1996; 67(1): 52-56.
2. Graham PH. Compression prophylaxis may increase the potential for
flight-associated lymphoedema after breast cancer treatment. The
Breast. 2002;11:66-71."




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[rinaina]

received a script from my surgeon and checked with my insurance as to where to buy it so it would be covered. went to the closest medical supply place to get measured and it was fully covered by my insurance.

[Karen Weixel]

I had 5 nodes removed and I wear a sleeve when I fly. I got mine (fitted) at a medical supply company that a friend owns.

The only problem I have with the sleeve is that I get really hot with it on.

Karen

[RobinP]

Thanks again for sharing, folks, and for the reassurances that a compression sleeve, and even perhaps a compression glove, is the way to go for flying. It does seems to be the consensus opinion here, which does agree with some research I did late yesterday on the National Lymphedema Nework Website. Thanks, Becky, for the informative comments about wearing the compression devices after the flight too. That was a helpful tip and something I will definitely do.

[Catherine]

I fly about 3 times a year and wear a sleeve on my arm where the lypmph nodes were removed. My physical therapist is a lyphadema specialist and fitted me. She recommends them and also says wear for a few hours after the trip.

Had 33 rads. The radiation doctor said sleeves not necessary and sort of laughed. Well I laugh behind his back, because I do not think he is as up to date as my physical therapist is.

I vote for the sleeve. But my research is not as good as others on this site. I was a little scared by the post that said it could also be harmful.

Hang on for the ride, Catherine

[Lani]

once the Boeing 787 Dreamliner is in service. It will offer atmospheric pressure (as well as normal humidity). The former should prevent swelling whether venous or lymphatic and the latter should help prevent drying out of the nasal passages which makes it easier to catch cold or flu viruses. All should be important to breast cancer patients, particularly those on herceptin.

It is the fact that the surrounding air is at less than atmospheric pressure which makes fluid tend to move from an area of high pressure to one of lesser pressure.

I have attended lectures on new lymphedema clinical trials where I spoke with Dr. Stanley Rockson, one of the few vascular surgeons with an interest in lymphedema (in fact he heads a lymphedema clinic and has published on the subject) He seems to believe that lymphedema can be worsened by airflight--

I would like to start a thread inquiring whose lymphedema, whether manifested by swelling or pain, or both began with or was worsened by airplane flight and whether utilizing a sleeve prevented further swelling on subsequent flights and/or improved the pain.