Lymphadema beginning

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star2017
star2017 Member Posts: 827
edited January 2019 in Lymphedema

I had my MX with 8 nodes removed back in October 2017. While I experienced some arm discomfort and pain, no one diagnosed me with lymphedema bc there was no swelling. I had a pain in the arm that gradually moved down the arm and seemed to go away, but I think I was a little reserved in my movement of that arm since then. The BS couldn't explain the pain, but I'm realizing it was likely cording.

Last month, I flew for the first time since my surgery. Since then I've noticed pain in the arm and also swelling. It's not a lot, but it's happening. I've gone to PT, and so far stretching and her own manual work seems to be effective (it's actually amazing how much it has helped!), but is this potentially a chronic problem? Do you have advice? She admitted there just isn't a lot of understanding of lymphadema. I'd appreciate any advice you have. Do you think the airplane what caused the lymphedema?

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  • mellee
    mellee Member Posts: 434
    edited January 2019

    Hi Star,

    I'm sorry you have one more thing to deal with! Lymphedema is so frustrating and unpredictable. It could develop into a problem, but there are many things you can do to manage and control it.

    The airplane definitely could have triggered the swelling. I recommend wearing a compression garment and glove next time you fly. Juzo and Jobst are the brands my PT recommended (Lymphedivas are more fun, but they don't last quite as long). I bought mine on Amazon and they work well. I forgot them once on a short flight from Boston to NY and I really felt it. They work!

    Sounds like you are on a good track with your therapist. Hopefully she is teaching you lymphatic massage so you can drain your arm. Also, if things get worse, there are lots of things you can do. I got a custom nighttime garment that looks like a giant oven mitt. It is basically a replacement for wrapping, which I found difficult and uncomfortable. Wrapping is the technique used to reduce arm size. Compression is for maintaining arm size, and that's where the compression garments and the lymphatic massage come in.

    I was also able to get my insurance to cover a pneumatic pump, even though my lymphedema is relatively mild. That has been amazing for me. It replaces the manual massage. It makes life so much easier!

    Anyways, that's off the top of my head. If you have any questions, let me know and I'll do my best to answer.

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  • vlnrph
    vlnrph Member Posts: 1,632
    edited January 2019

    We flew yesterday, leaving a snowstorm well behind us. After landing, the plastic water bottle we had purchased at the airport and only partially drank was all caved in. My husband asked 'What's wrong with this container?' I replied “High altitude/cabin pressure: it's why I have to wear a sleeve and glove!"

    So, your concern is real. Most of us try to get our upper extremities measured prior to surgery so there is a point of reference. Unbelievable how many don't get this done. Then, even without symptoms, getting fitted for compression is highly recommended. Check out the website stepup-speakout for further detail and explanations you can share with the physical therapist. Mellee is probably referring to the Solaris garment which I also have.

    Subclinical LE is possible. Elevate, hydrate and inquire about proper self-care (avoiding injury, burns, etc). You can do much to educate yourself and those with whom you interact.

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  • mellee
    mellee Member Posts: 434
    edited January 2019

    My nighttime garment is Jobst's JoViPak (http://www.jobst-usa.com/jobst-lab/jovipak/), but it does the same thing as the Solaris.

    I wasn't measured prior to surgery so I hear you on that. It's crazy that isn't done as a matter of course.

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  • vlnrph
    vlnrph Member Posts: 1,632
    edited January 2019

    Thanks for the link - how interesting that the designer was a woman who managed to name the product after herself! I usually think of Tribute first because that female inventor was based here, near Milwaukee...

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