Lymphedema that spreads to neck and back of head

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Tessy
Tessy Member Posts: 47
edited November 2014 in Lymphedema

Has anyone experienced a fullness or pressure at the ear/neck area and back of head on the same side as your arm lymphedema? My arm is not that bad but lately I have had these symptoms. Was at the Oncologist yesterday and the NP was not too concerned about it and I am of course always worried that it may be something else. She wants me to go see a regular medical doc. I have an appointment with PT with a lymphedema specialist next week also. 

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  • aunt_paula
    aunt_paula Member Posts: 271
    edited August 2014

    I have pressure at these points too. Surgeon and OT have evaluated it but not found anything concerning (beyond the LE). I am curious to see what your PT says!

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  • Tessy
    Tessy Member Posts: 47
    edited August 2014

    Aunt Paula, 

    Did your symptoms ever go away? What did they tell you to do for it?

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  • Tessy
    Tessy Member Posts: 47
    edited August 2014

    Thanks for the input JO-5. Oh and I also have ringing in my ears that I can only hear if it is quiet. I read on here that it may be related to the Tamoxifen, but then again who knows! Of course my first thought was brain mets! Don't even want to think about that! 

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  • aunt_paula
    aunt_paula Member Posts: 271
    edited August 2014

    Hi again--I forgot to add this topic to my favorites so just seeing it again. Mine is also worse in my breast and shoulder than in my arm, and the neck swelling is pretty constant because I haven't found an effective way to compress there. I have now used all of my PT/OT benefits for the year, so will be winging it until January, when I can pursue it further with a new therapist.

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  • glennie19
    glennie19 Member Posts: 6,398
    edited August 2014


    well, that sucks Aunt Paula.  Would swell spots work on the neck?  there are so many different shapes.

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  • vlnrph
    vlnrph Member Posts: 1,632
    edited August 2014

    Not sure how practical they would be in summer but I wonder if compression turtleneck shirts would help at all. Under Armour and other brands are promoted by sports shops around here during the ski season. A petite person might even be able to try youth sizes... 

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  • aunt_paula
    aunt_paula Member Posts: 271
    edited August 2014

    I haven't tried swell spots, but that might work. I will look at Under Armour for compression turtlenecks (I wish youth sizes were an option! lol)--my only concern is that it's extremely hot where I live. I wonder if I could modify one a bit and see how it works?

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  • BrooksideVT
    BrooksideVT Member Posts: 2,211
    edited August 2014

    Sounds to me like a perfectly ordinary inner ear problem, possibly with vertigo or generally lousy feeling when you move your head a lot?  I've had it for years, and can tell it's worsening when I feel that pressure in the back of my head.  In my case, limiting head movement, increasing fluids, and decreasing salt and, oh yes, reducing stress, all keep it at bay. 

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  • Tessy
    Tessy Member Posts: 47
    edited August 2014

    Thanks for the input ladies. BTW, what are swell spots?

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  • glennie19
    glennie19 Member Posts: 6,398
    edited August 2014

    Compression pads that are specially designed to help compress and move the lymph.  http://www.lymphedemaproducts.com/products/preformed_solaris.html

    Those are the ones that I've used.  They also have these at that website too. They seem to have good prices. http://www.lymphedemaproducts.com/products/preformed_jovipak.html

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  • LymphActivist
    LymphActivist Member Posts: 64
    edited August 2014

    Tessy,

    The right side of your head and neck, as well as the right side of your upper torso and right arm all drain to your right venous arch, and a venous problem in the shoulder area might explain sluggish lymph drainage, swelling and heaviness and pain. May I make a suggestion? Talk to your doctor about the possibility of a head and neck venous check. It may also help if you were seen by a qualified and certified lymphedema therapist, preferably one who has been trained on head and neck lymphedema.

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  • lionessdoe
    lionessdoe Member Posts: 780
    edited August 2014

    My Lana certified PT showed me there are lymph nodes we can massage in the front and rear of the ear that help to drain the swelling there and from the head. I will try to find a link that shows how.

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  • Binney4
    Binney4 Member Posts: 8,609
    edited August 2014

    Here, Doe, try copying this into your browser:

    http://www.aurorahealthcare.org/fywb_pdfs/x23169.pdf

    Hugs,
    Binney

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  • Tessy
    Tessy Member Posts: 47
    edited November 2014

    lionesdoe and Binney4,

    Thanks for the information. I have not been on here as much lately, I will check out the link. I did go to a lymph PT specialist back in August and she sent me a link for a video to watch for lymph drainage. I have been so busy and then I had some additonal reconstruction surgery 3 weeks ago. The video is on my list of things to do!

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