MLD without wrapping?

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mthomp2020
mthomp2020 Member Posts: 1,959
edited June 2014 in Lymphedema

Went for my evaluation today for my leg. I'll be going 3 times a week for MLD only, no wrapping. I think she feels that since I'm unable to do the wrapping myself due to not being able to reach my foot because of the tumor on my spine, and having no one there during the week to help me, she'll try to use MLD only to bring the swelling down. I'm to do the MLD myself at home 3 times a day. I won't be able to do my foot and lower leg, just from the knee up. She's planning on doing 4 weeks of this. My insurance has only approved 12 visits. If it looks like it'll take more, we'll have to appeal, and possibly end up going a week without the therapy.

I hope this does the job. She is LANA certified, and works through a hospital physical therapy department. It sort of worries me that I won't be wrapped, since that's supposed to keep your leg from swelling back up after the MLD. I guess I'll have to wait and see. I wasn't as swollen today as I sometimes am, and even so the leg was noticeably larger. She thinks we'll be able to bring it down with the therapy. At one point, my upper thigh was 2 inches larger then the other leg.

I wonder if anyone else has had a therapist do MLD only with no wrapping, and if it worked for them. I'd hate to put in all this time and not have it take care of the swelling. Each session is 1 1/2 hours, so pretty time consuming.

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  • nowords
    nowords Member Posts: 423
    edited September 2011

    I had MLD with a PT and after wrapping three times I was generally worse than better, so I used a sleeve compression . My arm measurements were overall better for the most part...as well as I think the MLD pushed that fluid out and the danger of it staying in creates the fibrotic tissue and infection potential...I think...The thing that works best for me is my custom night garment....my arms are never the same size...but my effected arm is my right, and I am right handed...I have good luck keeping things under control with the garment when I am active...and not wearing it if I am not is actually better for me as long as I use the night garment. I don't know about leg garments and the advisability of that but I do think they are available. I think if your Dr. justifies the need for additional treatment you should get approved...and some insurances pay for two compression garments a year and a custom night garment....diligently following the instructions for diet and elevation etc. go a ways towards helping get things under control and staying there as well. I did not go back to "normal" but maintain and have not had any more severe swelling since the initial one that I was treated for.

    There are a few who are very knowledgeable who check this thread often as well as info on the BC.org site itself...I can't recall if it addresses your particular concern though...

    Good Luck...the sessions are a pain but worth the initial investment of time to get it under control...you may be able to find a home care type therapist to come to your home and wrap you that your insurance might cover...

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  • kira66715
    kira66715 Member Posts: 4,681
    edited September 2011

    Marsha, I'll ask Binney to comment--is she not wrapping because you won't be able to do it? In my opinion, she should wrap and get the volume down, then fit you for compression garments and get you a donning aide. I really don't think MLD alone will give you significant reduction in the leg swelling. I'll pm Binney now.

    Hang in there.

    There are all sorts of garments for legs, daytime and nighttime ones. My LE therapist's sister in law has leg LE due to melanoma and she wears a reid sleeve on her leg.

    Kira

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  • mthomp2020
    mthomp2020 Member Posts: 1,959
    edited September 2011

    I was thinking about getting a custom night garment after the initial therapy, like a reid sleeve or a solaris.  It could be my insurance would pay for it, but if not I'll just bite the bullet.

    I really expected to have daily therapy and wrapping for about 2 weeks, from everything that I've read.  So it surprised me that it would only be 3 times a week, and no wrapping.  I think she's not wrapping because I won't be able to do it by myself.  I'd hate to go through all this and end up having to start over again and do it daily.  The other thing is that I can't go on Mondays for therapy since that's my chemo day, and I can't change it.  It's the only day my onc is in that office.  So I go 3 days without going in for MLD. 

    As the swelling goes up into my hip, I'll be wearing the compression panty hose.  I will get a donning aid for that, so that shouldn't be an issue.  I'm just glad I'm not doing this in the middle of summer!  I haven't worn panty hose in so long - I hate them!  I guess I'll just have to get used to it, though.  My insurance does provide 4 garments a year, so at least that's covered.  Hopefully I can get them to cover a night garment as well. 

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  • Binney4
    Binney4 Member Posts: 8,609
    edited September 2011

    Marsha, the impression you had about daily wrapping for a couple of weeks (even four days a week, if you can't do Mondays) is right. That's the standard protocol. The National Lymphedema Network has Position Papers, one of which describes treatment. You might copy that off and take it with you next time and ask her to clarify with you why she's not doing the wrapping. It is extremely effective, and the idea is for the therapist to do it for you during treatment, so the fact that you can't do it yourself is beside the point. And I'm with you: wasting time (and money, and PT visits) trying out some lesser treatment seems like a frustration just waiting to happen. Here's the NLN site -- their Position Papers are listed on the right-hand side of the page near the bottom:

    http://www.lymphnet.org

    On the other hand, if you talk to her about this variation from the standard and her reasoning makes sense to you, then by all means go with it. She's trained, presumably she's experienced, and there may be great reasons for her plan. But the plan and goals of therapy should always be something YOU agree with, not something foisted on you, so it's best to be clear about it from the start.

    Yes! to the night garment! Hope your insurance will cover that as well. Any doctor on your team should be able to help you get that approved. Onward!Smile
    Binney

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  • mthomp2020
    mthomp2020 Member Posts: 1,959
    edited September 2011

    To some degree, I wonder if the fact that I'm stage IV has anything to do with the treatment plan she came up with.  During my evaluation, she asked what my goals were.  I told her I want to get this under control so it doesn't progress.  I want to get rid of as much swelling as I can, as it does get painful, and is limiting my range of motion, which is already limited from my spine lesion.  Right now, the only way to get the swelling down is to elevate my leg, and when I do that it puts pressure on my bad vertabrae and makes that hurt worse - a real catch 22. 

    When they do the daily MLD/wrapping, what happens on the weekend?  Do you remove the wrap or try to get through the whole weekend without rewrapping, or do they have you do it yourself?  I'll be going 3 days over the weekend without any therapy as I have chemo on Mondays. 

    I know my flexibility problem is a factor.  There's no way I'll ever be able to wrap my foot/ankle area, and I don't have anyone here at home to do it for me.  I'm pretty sure my insurance company would deny having someone come here every day to do that. 

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  • nowords
    nowords Member Posts: 423
    edited September 2011

    I sent you a Private Message...but also wanted to say that it may be worth a shot to talk to your PT, your local visiting nurse/home health companies and your insurance company. Visiting services are far cheaper for insurance companies than PT. You can also ask a certified LT if they have license and insurance to do home visits...and just pay for the days you need for a few weeks until it gets under control...

    When my arm flared up I went 5 days in a row for two weeks and then every other day and more as needed. I have retired military insurance, Tricare...and they approved 30 days and an extension if documented need is shown....The time I tried being wrapped for the weekend...the plan was to cover the arm wraps with plastic in the shower and see how it went if I was not comfortable wrapping myself...because I am right handed and the bad arm was that one...my first try at wrapping was not great...good thing the night garment works better for me....plastic on the leg would be tougher...

    It would seem medically unethical to base this type of care on stage 4...but that is just my two cents...

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  • mthomp2020
    mthomp2020 Member Posts: 1,959
    edited September 2011

    To some degree, I got the impression she thought the daily treatment would be somewhat overwhelming.  Personally, I think it would be easier to do 2 weeks of daily as opposed to 4 weeks of going 3 times a week and dragging it out.  I don't work, so it's really not a big issue time-wise.  It's worth it if it really gets things under control.

    I'll be going tomorrow for my first MLD, so I'll ask a few more questions.  As I can't do self-massage on my foot and ankle, I'll see if I can bring my husband on Friday so she can show him how to do the self-massage for those areas, since they're the most troublesome. 

    You guys are the best!  I get so much more info here then I ever get from my idiot onc!  Funny thing is, it was his NP that thought it was lymphadema as well as myself.  He didn't even know about the LE appt. until I told him about it.  When I told him, he said it was "rare", yet both me and the nurse thought of it.  He even mentioned getting a CT scan done, and I informed him that he already had that done and there was nothing on it that would cause this.  Can you say doesn't read charts before the appt.?  What can you expect from a 2-3 minute appt.

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  • Binney4
    Binney4 Member Posts: 8,609
    edited September 2011

    Marsha, the fact that your Stage IV diagnosis may be influencing this plan occurred to me as well, and if so it is unfortunately not uncommon. A workshop at the NLN medical conference I attended was all about making therapists comfortable with treating Stage IV patients, and I was surprised it even had to be addressed, but there it is. You'll need to be a bit more assertive about what you want here. Smile, but be firm and repeat your goals as often as necessary.Laughing We've got your back!

    With a three-day lapse in treatment you can either leave the wrapping on for the three days (not ideal, since with reduction the wraps will loosen), or you might talk to her about a Circaid or FarrowWrap garment up front, because they're easier to don and adjustable. JoviPak makes a "night garment" called an Inna Boot that might also work (it's also adjustable) -- have her talk to them about adjusting it as the swelling goes down if that's needed beyond the velcro straps that come with it.

    If you're unable to elevate your legs comfortably you might try elevating the foot of your bed slightly -- even just a few inches. That way you get the benefit of gravity at night, and that should help make the morning less of a problem. (Offer your DH an extra pillow or two if he feels a bit upside down!Laughing)

    As for self-MLD, it's a great idea to have your DH help, but you and your therapist might also put your heads together and see if you can come up with some sort of reaching devise that would make it possible for you. There are a number or reachers made for assorted disabilities, and there should be some simple way to adjust the technology so it works for you. Maybe, if your therapist is a PT, she needs to consult with an OT on how to make this work for you.

    LE is nothing if not creative!Undecided Keep working on this with her, or consider a second opinion. You're spot-on about your own needs, and I'm sorry you have to stick up for yourself. But I do get the impression you're up for this!Kiss Brava! Let us know how we can help.

    Big hugs,
    Binney

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  • mthomp2020
    mthomp2020 Member Posts: 1,959
    edited September 2011

    Thanks for the reply Binney.  I actually don't have a problem elevating my leg at night, I use a couple of pillows.  The swelling does come way down by morning.  It's more problematic if I'm sitting watching TV.  I'm usually doing some knitting while watching, and you can't lay down to do that.  If I lay down while watching TV, I fall asleep. 

    One problem is there aren't all that many LE therapists in the Cincinnati area to begin with, and then they have to be part of the insurance network, which eleminates several of them.  I would suspect going to someone out of network would be prohibitively expensive, so I definitely don't want to be paying for this out of pocket. 

    Someone here suggested using a paint roller with a soft cover for working on the foot and ankle, which sounds like a pretty good idea.  I really want to get my ankle down so I have more flexibility.  Driving is rather uncomfortable when going back and forth between the gas and brake.  I can do it, it's just not the most comfortable thing in the world.

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