? for those using a compression pump

Laural136669

My LE therapist has recommended the use of a compression pump as an aid at home to keep LE in check. If you use one, I would love to hear your opinion as to what type of pump you have and how often you use it. Currently looking at a LymphaPress or FlexiTouch pump which both offer trunk clearance before and after the arm clearance.

Katiejane

  I have a Flexi pump and I was never happy with it.  I am a small built person(5'4" 120-130 lbs) and the garments that came with the pump seemed to be for larger framed people.  Therefore, the garments never did fit right and I ended up w/ more swelling in certain places than I did before I used the pump!  Everyone is different and as we all know, what works for one doesn't always work for the other.  I know of people that the Flexi works well for.

Also, I am a very active person and had a hard time finding time in my day to use the pump.  It is time consuming in my opinion.  Now that I've had DIEP reconstruction, use of a pump is a big No-No!

So, mine sits in the storage room upstairs!  MLD works best for me!  Good luck with your decision!

Katiejane

anna4969

Katie Jane

Why is using the flexitouch a no no with having had diep reconstruction?

 Thanks

NatsFan

Katie - I've had a DIEP and try to use my Flexitouch at least once a week.  Neither my ps nor my LET ever expressed any concern about it, so I'm curious why you said it's a no-no with a DIEP. I'm 5'2" and 145 pounds and haven't had any trouble with the fit, so maybe you didn't get a good fit.  Also being an active person, I found the best time to use the Flexitouch at night when I go to bed - the rhythmic sound and feel are soothing, and I usually doze off during the cycle, and will wake up after it's finished.  It's an easy matter to take off the stuff and I go right back to sleep. 

As for Flexitouch v. LymphaPress, my LET was adamant that the Flexitouch in her opinion was better for truncal LE.  

SleeveNinja

Nats - where is your LE? Arm trunk both other??? Can you describe how flexi helps you?



My LE is arm and trunk. Trunk is out of control (pec above mx scar; axi; side; whole back quadrant (shoulder to waist)) Considering flexi as last resort.



BTW, anyone know if it would be possible to use it too much? Assuming correct fit, etc., could you do any harm?



Thanks,

Sleeveninja

NatsFan

I have Stage I LE right arm and right upper quadrant truncal.  My right arm is well controlled.  The truncal flares despite my best efforts (daily MLD and Lebeds, wearing Underarmor compression when gardening or doing other work like that, etc.).  My affected areas tend to be the upper back around the shoulder blade area and my ab above my DIEP scar. 

How does the Flexitouch help?  I notice it more when I don't use it.  When I don't use my Flexitouch for a few weeks, it seems that my other efforts don't control the truncal as well.  So I've tried to get in the habit of using it at least once a week as a management/control measure.  It is pricey - insurance covered most of the $9K cost, but I still had to pay $1100 out of pocket.  I really didn't want to spend that kind of money, especially since I had a great LET that I saw periodically to help move the truncal fluid out when I flared, so I didn't move forward for a long time.  I decided to go through with it when my LET said she was moving away - it's been so hard to find a good LET and I wanted to have all the self-management tools I could get in case I can't find another LET as good as she was.   If I still had my good LET around, I might not have gotten the Flexitouch, but since I worry I might be left on my own for an unknown amount of time without a good LET, I decided to bite the bullet, put off spending on something else, and get it.

I have no idea if you can use it too much, so I can't help you there.  I also don't remember what the return policy was - maybe you could try it for a month or so and see if it helps and if not you could return it.  I don't know whether that's even a possibility or not, but it might be worth asking.   

Binney4

Ninja, you can at least contact Flexi and ask for a demo, at home or at your therapist's office. Yes, you can use it too much. Once a day is plenty. Not sure why, but they warn about not over-using. You have to clear your nodes each time before (and preferably after) using it.

Be well,
Binney

Katiejane

  I will be honest, I'm not sure why Dr. M. doesn't want her pt's to use their pumps after reconstruction.  I didn't think to ask as I have not used mine for 3 years-it's printed in her discharge orders.  I know she is a lymph thearpist and believes in MLD. Just guessing here but probably a matter of control of pressure applied by the pump. With MLD is is very light-the pump feels like a heavier touch-like I said just a guess.   Katiejane

Kicks

I use my Flexi-Touch daily.  It takes it an hour to run the full cycle for me which starts with upper leg and lower abdomin then progress.   I have been told to only use it once a day (or less) as if you need it more, then you need to see LET ASAP.

According to my LE Guy, the pressure is programed into the machine for your needs.  He is now one of their Representatives as there were none within over 300 milles when I got mine. 

I was the first one he had ordered a unit for.  He did not like any of the other brands that he'd seen but others at other Faciities suggested he get me a Flexi-Touch.  He did and really liked it (as I saidd he is now a Rep for them) and has ordered them for others.

The fit can be adjusted with straps that come with them to get it to fit better.  I have to use the straps over my shoulder to get a good fit.

SleeveNinja

Nats - thank you!!!  Your description is very helpful. How long have you had your flexi?



 My arm is also well controlled -- which is to say, however funky it feels, it always measures about the same.  Trunk is gradually worse (more edematous areas, spongier / thicker tissue texture,
more overall discomfort, more frequent "bad days" as time (4 yrs) goes on. 



The few things I count on to help (swimming mostly, homemade compression shirt, arm bandage w many extra layers), help less and for shorter durations.  Most alarming, truncal LE progression, though gradual, is accelerating. I also notice as trunk gets worse, arm needs higher compression to feel comfortable. 



I feel better when I have a few LET-MLD sessions. It's subtle. I wonder if flexi would provide a similar lymphatic "boost" -- and if it would be enough to keep truncal LE from progressing further or as fast.



Binney - what exactly is node clearing?  Do you mean neck/ axi/ inguinal  strokes? Or something else? 



Kicks- is your LE arm and trunk?  And how long have you had your flexi? How does it help you?



Anyone ever use or hear of sleeves sleeve & vest from Bio Compression Systems?

ohio4me

I have a Flexi-Touch and find it helps in additional to regular MLD. The good things - slow, rythmic massage, and relaxing. The challenge - one hour is a lot of time so I use mostly at night. I will only use in the afternoon (usually Sunday) when my arm has some swelling and I'd like an afternoon nap.

I used it everyday during radiation and have backed off since. My goal is 2-3 a week. I know it helps, just need to be more committed.

My insurance covered 100% but is was just under $5000. Didn't look at any other units, just went with PT recommendation. Too novice at the time to know differently. I actually got the machine before LE became a daily need so I had it early in the program. I'm one year from right MX/node removal and glad I have it. I even took it on my last work trip (drove onsite)- didn't need it but had it with me just in case. It needs it's own suitcase and I plan to carry the machine on board when flying.

I would suggest getting one if you can. Gives me confidence I have all the tools I need for home care.