Getting a night garment

allisontom911
allisontom911 Member Posts: 425
edited June 2014 in Lymphedema

Well my LE has not gotten any better or worse. My therapist said this is my new normal. I have even had a pump machine at home and that doesnt work either. Wrapping didnt work. It is not a huge difference but is this just the way it goes, you will always have one arm a bit bigger than the other?

My insurance approved my night garment. I am also getting a vest as we think I have a little LE under my arm from my recon. I had a Lat Dorsi flap.

I would love to get a Flexitouch my my therapist said insurance almost never approves them...sigh...life goes on!

Comments

  • Kicks
    Kicks Member Posts: 4,131
    edited April 2012

    I'm confused.



    You have a "pump machine" at home but want a FlexiTouch?



    Wrapping 'didn't work'?



    Arms are slightly different in size? Everybody is - both sides of the body are somewhat different.



    You say nothing about day garments. But are getting a night garment.



  • camillegal
    camillegal Member Posts: 16,882
    edited April 2012

    I don't know what a night garment is for LE.  But I do know now I buytops that have a flared sleeve or dolman for somethin similiar- my ine arm is quite different when I have something on that is reg, sleeves it's always titghter (like crazy) on one side more that the other so those tops are gone. And in the summer I go for shear fluff sleeves so my arms are covered but not warm.So u adjust. that's all.

  • allisontom911
    allisontom911 Member Posts: 425
    edited April 2012

    Sorry I was not very clear. I have been on and off the board the last 6 weeks or so. My LE Therapist is letting me use a loaner pump while waiting to get my night garments. I do have a Class II sleeve and glove I wear during the day. Since I dont have a night garment yet I use the pump before bed.

    I should have the night garment in about 2 weeks I hope.

    No, wrapping didnt work. I had no change to very very minimal change plus and minus.

    Yes my arms are noticeably different from LE, not just your run of the mill every day different. I see a therapist, get meausred and so on.

    I was just hoping for some input from people. Experience with night garments vs. pump. Not sure I can afford to buy one.

  • Kicks
    Kicks Member Posts: 4,131
    edited April 2012

    Still not sure what you're asking. - Night garment vs 'pump'?



    I use my FlexiTouch for an hour every morning. I wear my Solaris Tribute night sleeve every night. Under it I wear a finger tip to above elbow Isotoner glove. I have 2 'over sleeves' I can add if I feel I need a little more compression some night.

  • Outfield
    Outfield Member Posts: 1,109
    edited April 2012

    Hi Allison,

    I'm a little confused too.  Is there a reason you would have to do either/or?  Is it financial?   I apologize if I'm seeming dense.

    I  don't find my nightgarment (Solaris Tribute) to be onerous at all.  It's very comfortable.  I find myself looking forward to having it on after a long day in the sleeve, although to be truthful I rarely mind the sleeve much either.

    Mine does seem to work.  I don't notice the difference now because my lymphedema is well-controlled and stable, but when I first got it, it did seem to be a big part of getting me there. I apprciate that it takes no time at all - I wriggle into it in about 15 seconds and that's it, I'm done with thought and effort.

    I commented before that the only negative that I could see about the night garment is getting out of it quickly for midnight intimacy, but Binney pointed out that you can get one with zippers for easy removal.

    Are we getting near the answer you were looking for? 

  • allisontom911
    allisontom911 Member Posts: 425
    edited April 2012

    I guess I was just wondering if one was better than the other. Should I have both. I am confused too since I am new to all of thisLaughing

    I just want this under control and I dont feel it is under control but in the 4 weeks I went every other day to therapy it didnt change. She said this is my new normal. My LE arm will never be as small as my other arm which is totally depressing but anyways.....sorry if I am unclear.

    What does a night garment do that a regular sleeve I wear during the day doesnt...Maybe that is the question I should of asked.Embarassed

    I appreciate the input

  • BeckySharp
    BeckySharp Member Posts: 935
    edited April 2012

    Allison--How long have you been wrapped?  Was it only in daytime or night also?

    I was wrapped 24/7 for three months before any difference.  I have minimal difference now between the arms.  I wear a sleeve, gauntlet, and night sleeve to keep under control.  Wrapping compresses to decrease size.  Compression garments just retain the shape you  have.  I don't have a pump so cannot comment.

    Also are you doing self MLD daily?  MLD exercises?  Until I was taught how to do it correctly I did not get differences. 

    Keep at it.  It may not be the new normal.

  • Binney4
    Binney4 Member Posts: 8,609
    edited April 2012

    Allison, I agree with Becky. You might want to look for a second opinion from another LE therapist. Here's how to find a well-qualified one near you:
    http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm

    At any rate, you don't want to order a night garment yet until you've had someone else look at your situation. There's a difference among therapists, sometimes because of training or experience, other times simplyd because they don't ordinarily have knowledgeable supervision and may be taking short-cuts. 

    Let me see if I can explain the different options you've mentioned. First, wrapping is the gold standard for reducing swelling. The therapist should have been doing complete MLD (which takes most of an hour if she does it right), then wrapping with layered short-stretch bandages. These stay on for 23 hours, then you shower and re-wrap. During the therapy period you're never without wrapping except for showering. 

    Every day while you're wrapped, you do several simple, slow exercises your therapist has taught you that help move lymph fluid. The action of the muscles working against the bandages is what stimulates the lymph system and moves the fluid out. 

    Once the arm is as reduced as it can be, you can be measured for day garments: a sleeve and glove (or sometimes a gauntlet instead). The day garment will not reduce the swelling, but it will help maintain the reduced size of your arm. At night, you continue to wrap your arm (or, once your arm is reduced, you can substitude night garments), because day garments can actually cause swelling if you sleep in them. The night-time wrapping (or the night garment) helps you maintain the loss and also works while you sleep to reduce any swelling that happened during the day.

    Sometime during every day, you do your own self-MLD massage and continue with the LE exercises. You also lotion your skin well so it doesn't dry and create tiny, nasty cracks that can allow bacteria to enter and kick off an infection.

    The pump is NOT a part of this routine. It's a substitute for daily self-MLD that is useful for women who can't do it themselves (in my case I have a Flexitouch because my LE is bilateral, and when it flares I can't do both sides myself). Other women use it if they have arthritis or fibromyalgia or something else that makes using their hands difficult. Sadly, some therapists use it IN PLACE OF the hands-on full MLD they should be doing, because it saves them time and effort. That's unfortunate, and not nearly as effective as the actual hands of a well-trained LE therapist.

    I hope some of that helps. And I hope you get a second opinion and better news.Smile

    Gentle hugs,
    Binney

  • Kicks
    Kicks Member Posts: 4,131
    edited April 2012

    As it was explained to me - the difference between day garments and night garments is the principles they 'work' on. Day garments are designed to 'work' with your movements as you are active during the day. Night garments are designed to work passively as while you sleep you do not move much at all. Different principles.



    Certainly MLD machines can be used by those who cannot do MLD massage but they are not just for those who cannot do their own manual massage. It's another tool in the arsenal. Yes I do manual massage but for better control I use my FlexiTouch every morning (the cycle takes an hour to run.). It does make a difference for some who can, and do, manual massage during the day.











  • allisontom911
    allisontom911 Member Posts: 425
    edited April 2012

    i already ordered the night garments. vest and sleeve. she did say it can be adjusted 1x without a cost. i really appreciate you all replying. i would stay wrapped for 46.5 hours. I would shower then go to therapy. She did not do a full MLD on my each time. I went a total of 9 times. 2x we looked at different sleeves and so forth. 1x we measured for the night garment. 

    I am just so discourged. I work 50+ hours a week. I have a 2 1/2 year old and a house to keep up with. The flexitouch would just be a big time saver for me. I have been using this current pump before bed and I do have to do the MLD to move it to the other side. It is not the flexitouch...

    My therapist is not on the look up page Binney listed. So that is a huge disappointment. But there is one about 25miles away that I will call tomorrow and set up a 2nd appoitment. See what happens.

     I have always worn a class I sleeve and gauntlet while working out only until this all started. Now I wear class II during all waking hours and I have nothing for at night.

    I did not do any exercises for my arm while I was wrapped. I still went to the gym everyday but I do not do much with that arm. Sure is hard to bend while wrapped.

    Thanks again for all of your time and responses....I really appreicate it. I will let you know what this other therapist says.

  • BeckySharp
    BeckySharp Member Posts: 935
    edited April 2012

    Allison--a two year old!  I know how busy that makes your life.  Once I got my night sleeve and started wearing it was when I noticed big differences.  So maybe it will make your daytime life easier.  I had a therapist who told me I would get no better.  In fact she dismissed me and told me to go find a sleeve.  I made an appt with a CLT-LANA and had to stay wrapped longer plus she measured me for sleeves, etc.  I went from 520ml difference between arms to 80ml with her.  I think it is even less now.  So hang in there.  I hope you have better luck with new therapist.  A good therapist can make all the difference in the world.

  • allisontom911
    allisontom911 Member Posts: 425
    edited April 2012

    i go mondat to a CLT/LANA gal. excited to see what she says. will let you know next week!!

  • Binney4
    Binney4 Member Posts: 8,609
    edited April 2012

    Allison, looking forward to it with you!Cool Keep us posted!
    Gentle hugs,
    Binney

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