Lymphedema in a foreign country — long flight home

Hello, I've just discovered this wonderful forum. My lymphedema appeared after 23 years. Unfortunately, it came soon after I'd arrived in Europe where I have a dog-sitting gig through January 21 and was planning to travel on until mid-March. I arrived in Italy on November 16 and by December 3 the lymphedema was obvious, although I wasn't sure what it was or what to do about it. Long story short: I've searched for help here in the small city of Empoli, and searched the area online, but so far I get no answer or am shuffled around without any real treatment. I was sent to a shop and am having a sleeve and gauntlet made, so that's something. It will be ready January 10. I did find a LD therapist, but when she found I had had a reoccurrence in 2015 she felt she couldn't treat me for fear of "spreading the cancer." Even the osteopath who was giving my some relief from the shoulder and back tightness decided, after speaking to the LD therapist, to not treat me any more for the same reason. I've tried to reach my oncologist or his secretary back home in Canada via email, but so far, no calls back or emails from them. I haven't called as both the oncologist and nurse are too busy to take calls.

I've been doing a LD self-massage for about 2 weeks and Binney has just posted another video that looks and feels even better that I have started. I have not learned how to wrap, mostly because every video I've seen is different and it looks far too complicated and how do I do that with my undominant hand? I'm sure you know what I mean and I'm full of admiration for those of you who have learned this and do it regularly.

I guess my question is this: with regular self-massage, eventual regular wrapping and my sleeve and gauntlet, will I be able to fly home eventually and what will determine if I can or not? Do arms explode on airplanes? (My biggest fear). The flight from Rome to Victoria, BC is long — a 3-hour and a 10-hour leg with a lay-over inbetween. I will be changing my flight and am considering a train to Amsterdam, staying there for a few days, with possible treatment, and then the longer leg to Victoria.

Thank you for any thoughts or guidance and lots of love and respect to all of you here.

Angela

hugz4u - what great advice for McButterfly!

Angela, do you think that not wearing a compression sleeve on the plane may have been a factor? I'm taking an international flight next month and heard it is best to wear just as a precaution.

I'm in Italy (Milan) if you need any help from this end. Just holler if I can be of any help.

Sorry to read this has put such a damper on your trip

Angela, the reason there's no proof that flying can trigger (or worsen) lymphedema is because it would be unethical to set up a study subjecting women to a potentially damaging condition in order to compare those who take measures to protect themselves and those who don't. So there never will be proof of that. Unfortunately some professionals have taken that to mean there's no danger of it happening, and they have attempted to debunk the idea despite the overwhelming anecdotal evidence that it can, indeed, trigger lymphedema. While it's true that swelling in legs and ankles is not lymphedema, it's the lymph system that has to remove that fluid from the limbs. Since the lymph system in your affected area is already compromised from breast cancer treatment, any "normal" swelling presents a risk of overwhelming it. As someone whose arm and hand lymphedema started on a flight to Alaska, I'm not a believer in debunking risk reduction strategies.

That said, the fit of any compression garments is crucial, as a bad fit can actually make it worse. And as Hugz points out, there 's a lot more you can do to keep your lymph system happy when traveling.

1. Stay really well hydrated (I tell the flight attendant I have a medical condition that necessitates staying well hydrated and in my experience they've been happy to help supply me with water).

2. Move your arms frequently (see Hugz's suggestions).

3. At intervals, do some deliberate deep breathing, as that stimulates the biggest lymph vessel in our bodies.

4. Be careful about hefting your luggage around. This applies at the airport and on the plane, of course, but remember to guard your arm when you're packing at home too. Use smart body mechanics when lifting anything, and ask for help when there are others around (I've never had trouble finding someone to help lift heavy bags on and off the carousels or into the overhead bins). Don't sling a heavy bag or purse over that shoulder, either, as that compresses the lymph vessels (which are near the surface of the skin). Obviously wheeled luggage is preferable, but it's still heavy when you lift it.

5. You might want to protect your chest and back with some compression too, since they're subject to lymphedema risk as well. A sports shirt in a size smaller than you'd normally wear (and turned inside out if the seams bother you) is a good choice, and several women here prefer men's shirts because the sleeve seams are less restrictive.

If you do experience swelling on the plane despite your precautions, don't panic--you'll get things back in control once you're back on the ground.

For what it's worth, both Austria and Germany have long had a reputation as leaders in lymphedema treatment, since our standard Manual Lymph Drainage and wrapping started there. The US and Canada were slow to catch on, but fortunately we're better off now than even ten years ago. So if this therapist you emailed was well-trained in Austria, you may very well find yourself in good hands--try emailing again, or give him a call.

What I'm really hoping is that you'll be able to relax a bit now with the new information you have, and actually enjoy the rest of your trip without the anxiety that lymphedema can certainly cause.

It'll be good!
Binney

Angela, maybe finding someone who will wrap you for the flight or even use kinesio tape to help drain your arm might be options. Fingers crossed all goes well