Lymphadema

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SuzJ
SuzJ Member Posts: 427 Member

Anyone get a compression garment?

 

I have one, I put it on at night, and in the morning, I look to see where it ended up on the floor...

 

Another one was ordered, insurance say its an experimental thing and wont cover it - funny its listed next to penile implants..

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  • Curlyn
    Curlyn Member Posts: 189
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    They seem to cover treatments

    They seem to cover treatments/garments for breast cancer and others that they don't cover for head and neck. There still seems like there is stigma attached to head and neck disease (has anyone else found this?) even though the epidemic numbers are climbing, will continue to climb, at least until the HPV vaccinated population grows up. We all need to speak out but not sure where. Physio made me a head mask from thick stockinette, with slits for eyes, nose and mouth. So 2-3x per day for 30 minutes, I look like Mr. Potato head, but it works, esp if I do massage first. Some days I can't be be bothered and the lymphedema is almost completely gone.

  • lewcap
    lewcap Member Posts: 23
    edited February 2018 #3
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    I've used compression

    I've used compression garments  for my head and neck for several months. They worked for me especially when coupled with message by my therapist.

    Howver, I just purchased a compression pump and "custom" garments. The jury is still out. Every pain has not ended but only 4 treatments thus far. I use it 2 x a day, 30 minutes on one setting, 13 more for just head and neck.

    Dive into the computer and research it, and I''ll try to answer questions. Martha

  • hlrowe
    hlrowe Member Posts: 80
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    My massage therapist made me

    My massage therapist made me up a custom one. Biggest help though was massaging techniques she showed me and sleeping on a double pillow.

    My massage therapist was certified in head and neck. 

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
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    It is more than just my neck

    SuzJ,

    Yes I had one made, but I never felt comfortable wearing it.  It was too confining (like my mask).  I was relegated to massaging the edema right out of me.  Now I have turkey neck 24/7.

    I am not sure if the penile implant will help your edema, but you can give it a try.  Funny thing, my compression garment is next to my knee brace in the closet.

    Matt

  • Northwoodsgirl
    Northwoodsgirl Member Posts: 571
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    Compression Garments

    I am visiting from the uterine cancer discussion board. There is some national coverage mandate that insurance companies need to cover compression garments for breast cancer. It doesn’t apply to other cancers. That’s the power of the lobbyists from the Susan Komen Foundation. If compression garments are covered for one type of cancer it should be covered for all - lymphedema is lymphedema! I heard this week on National Public Radio that there are 5 centers in the US that successfully do lymph node transplants for cancer survivors suffering from lymphedema. 

    Lori

  • SuzJ
    SuzJ Member Posts: 427 Member
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    Well..

    I have been wearing it for a week and a half now, its more succesful than the chin strap one - its still on my head/neck when I wake up!

     

    As to wether or not it works - I have a jawbone, a neck, and the swelling is almost none existant, this is from a very swollen triple roll neck!

     

    Insurance didn't pay, but it was actually cheaper if I did self pay, 300 something with insurance, 242 without.. go figure!

     

    But if anyoone else is wondering about the success of wearing one, DO IT, it works

    (I also massage with the radiation cream at night, and sunblock in the mornings- just 5 minutes)

  • christine2080
    christine2080 Member Posts: 71
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    Photo or description, please!

    My husband is also dealing with lymphedema. He had his first appointment with PT on Monday, but can’t get in for the next 8 appointments until 3 weeks. He got in Monday by taking a same day cancellation. I found someone who does lymphedema massages that I am going to contact on Monday. The hospital recommended the place we went to with the booked up appointment & long wait because it’s a part of the hospital. I’m checking into whether our insurance will cover the new place I found. It’s actually quite reasonable so even if it’s not covered I plan to get my husband in to get started on the massages. He is currently doing self massages and wearing a chin/head strap I bought online. He is also taking walks with me and not spending the day resting on the sofa. His swelling is gradually going down.

  • Curlyn
    Curlyn Member Posts: 189
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    SuzJ said:

    Well..

    I have been wearing it for a week and a half now, its more succesful than the chin strap one - its still on my head/neck when I wake up!

     

    As to wether or not it works - I have a jawbone, a neck, and the swelling is almost none existant, this is from a very swollen triple roll neck!

     

    Insurance didn't pay, but it was actually cheaper if I did self pay, 300 something with insurance, 242 without.. go figure!

     

    But if anyoone else is wondering about the success of wearing one, DO IT, it works

    (I also massage with the radiation cream at night, and sunblock in the mornings- just 5 minutes)

    Hi Suzj- is it full head

    Hi Suzj- is it full head compression ie. over the head and pull down? What is it called. My swelling isn't as bad now so I am on the fence about it. Does it make your face all scrunched up? Or is it comfortable? Thank you.

  • Curlyn
    Curlyn Member Posts: 189
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    Photo or description, please!

    My husband is also dealing with lymphedema. He had his first appointment with PT on Monday, but can’t get in for the next 8 appointments until 3 weeks. He got in Monday by taking a same day cancellation. I found someone who does lymphedema massages that I am going to contact on Monday. The hospital recommended the place we went to with the booked up appointment & long wait because it’s a part of the hospital. I’m checking into whether our insurance will cover the new place I found. It’s actually quite reasonable so even if it’s not covered I plan to get my husband in to get started on the massages. He is currently doing self massages and wearing a chin/head strap I bought online. He is also taking walks with me and not spending the day resting on the sofa. His swelling is gradually going down.

    Hi Christine, I am finding

    Hi Christine, I am finding that at 15 wks out the swelling has decreased a lot. Partly, it was due to healing and I think activity makes a big difference. My pt also taught me a quick massage technique and that made a difference, as well. One last thing, I noticed that when I was tense with bunched up muscles the swelling and discomfort was worse (as it also could get way prior to all of this)so general massages can help c that. Glad you are having things look up.

  • christine2080
    christine2080 Member Posts: 71
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    Curlyn,

    Curlyn,

    Thanks! Surviving the treatment is proving to be quite the challenge! My goal is to keep my husband as comfortable as possible, but lymphedema is something else entirely.

  • SuzJ
    SuzJ Member Posts: 427 Member
    edited February 2018 #12
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    I have 2..

    I have this "chin strap" thing, basically straps and a lumpy padding - thats the one I find on the floor in the morning.

     

    This new one covers my entire neck with padding, and has a strap over the top. it has a really wide velcro at the top and back

     

    If I had to actually describe it, it looks kinda like whats under a nuns habit.. lol

    Its pretty comfortable, it doesnt scrunch my face like the chin strap one.

     

    Another point my PT told me - if you fly a lot (which I have been on new job) its pretty bad on lympadema, wearing this helps a LOT (covered with a scarf so people dont look at me funny..

     

    TSA pulled my chin strap out of the bag, and looked at me wierd, I just said "I have cancer" and they shut up..

     

    found it - link - http://www.jobst-usa.com/product/head-neck-night-garments/

    also need - http://www.jobst-usa.com/product/neck-pad-universal

  • Curlyn
    Curlyn Member Posts: 189
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    SuzJ said:

    I have 2..

    I have this "chin strap" thing, basically straps and a lumpy padding - thats the one I find on the floor in the morning.

     

    This new one covers my entire neck with padding, and has a strap over the top. it has a really wide velcro at the top and back

     

    If I had to actually describe it, it looks kinda like whats under a nuns habit.. lol

    Its pretty comfortable, it doesnt scrunch my face like the chin strap one.

     

    Another point my PT told me - if you fly a lot (which I have been on new job) its pretty bad on lympadema, wearing this helps a LOT (covered with a scarf so people dont look at me funny..

     

    TSA pulled my chin strap out of the bag, and looked at me wierd, I just said "I have cancer" and they shut up..

     

    found it - link - http://www.jobst-usa.com/product/head-neck-night-garments/

    also need - http://www.jobst-usa.com/product/neck-pad-universal

    Thanks, its always nice to

    Thanks, its always nice to have advice from someone who has tried products. Best to you suzj!

  • Curlyn
    Curlyn Member Posts: 189
    edited February 2018 #14
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    Curlyn,

    Curlyn,

    Thanks! Surviving the treatment is proving to be quite the challenge! My goal is to keep my husband as comfortable as possible, but lymphedema is something else entirely.

    Hi, he is probably still

    Hi, he is probably still healing. I had radiation to the one side only and it is no picnic.

  • christine2080
    christine2080 Member Posts: 71
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    Thanks! He’s not complaining

    Thanks! He’s not complaining about the compression strap I got for him. The first time he put it on he said it was very uncomfortable, but seems to have adjusted and wears it quite a bit.