Lymphedema

GravelPit
GravelPit Member Posts: 2
in Head and Neck Cancer #1

Hello-

Does anyone have any experience with lymphedema in their neck/throat?

Is this something that can go away? Or is it something that gets progressively worse?

Some days, it feels like I'm being choked. Other days, it's not TOO noticeable.

I finished treatment at the end of last October. The lymphedema took a couple of months to appear.

I do the massage techniques that the cancer center taught me-Does anyone do anything more?

Thanks for the input.

GravelPit

Comments

  • Dean54
    Dean54 Member Posts: 160 Member
    #2
    I have the same thing

    But I don't think the massage techniques do a whole lot do you Gravelpit? I have trouble swallowing first thing in the morning when the swelling is at it's worst but gets a little better as the day goes by.

    I bought one of those $60 facioplasty supports that to me doesn't seem to do a whole lot and they recommended a very expensive one to wear at nite but haven't pursued it. What does help for a while is to wear my motorcyle helmet for a half hour or so at a time. The chin strap tightens up under my chin and makes the swelling go down but it always comes back.

  • Winewagon
    Winewagon Member Posts: 2
    #3
    Massage therapy

    It was three months after my last treatment when mine developed. After frantically looking for information, we discovered that it was  a lymphadema and it wasn't life threatening, just slightly discomforting (physically and emotionally). It took me weeks to find an actual therapist properly trained in the lymphatic system. After the first appointment, the swelling was half the size and I was left with stretch marks for a couple of days. After the second appointment, two weeks later, it shrunk once again and the marks were gone shortly after. I'm waiting for the next appointment but as she is the only therapist in the region, it'll be three weeks. The process is peaceful, painless and relaxing and you can almost feel the draining taking place. I highly recommend it. 

  • DanceSkater
    DanceSkater Member Posts: 62
    #4
    Morning Lymphedema

    If your lymphedema is worse in the morning and improves as the day goes on, it will probably help a bit to sleep with your shoulders, neck, and head elevated. 

    Jan

  • SuzJ
    SuzJ Member Posts: 446 Member
    #5
    I went with the Jobst

    I cant recommend it enough!

     

    My neck looks NORMAL, honestly - one day I'll work out how to post pics, you wont believe its the same person!

     

    Honestly, this is the only time I'd recommenf - google Jobst Lympadema - you need the whole neck binding thing, and the padding that goes inside it, it was around $240, but I have my neck back!

  • AnotherSurvivor
    AnotherSurvivor Member Posts: 384 Member
    #6
    Your on-again off-again

    Your on-again off-again experience with lymphedema is consistent with my expereince.  Do a search on this board and I think you will find a couple thousand posts on it.  I also recommend the SuzJ neckthingy, but mostly I have found it gets better with just the passage of time.  There is a mess of abused tissue, and it takes time to heal.  I am doing a lot of walking right now, many hours of continuous, and find mine is coming down the fastest it has.  That said, I won't be surprised if it comes back.

  • hlrowe
    hlrowe Member Posts: 80
    #7
    I had it around 8 weeks post treatment

    My rad onc ordered a massage therapist who was certified in head and neck (many aren't). I had three sessions with her and she taught me some massage techniques. Insurance covered it. The massaging is extremely light! She even made me a homemade JoViPak to sleep in. It went away after a year.

    Sleep on a double pillow to help drain your lymph nodes. See a certified massage therapist if at all possible.

  • OKCnative
    OKCnative Member Posts: 326 Member
    #8
    I had the turkey neck start

    I had the turkey neck start within a week of treatment ending. One of the reasons I refused a neck dissection was to avoid Lymphedema! Mine was the worst when I woke up and got a little better during the day. 

    I started sleeping with my head slightly elevated and I'd do massages first thing in the morning while looking in the mirror. Then, as I drove to work or errands I'd use one hand to do more neck massages. I also moved my exercising from early evening to morning to heat my body up and get good blood flow. This was winter so I also ordered a neck scarf (like a dicky)and worse it all the time to keep my neck warm.

    Within about a month the Lymphedema reversed and now is gone, 5 months after that.

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