Flexitouch system

momtotenkids

So I have been going to therapy for LE off and on since March. My therapist recommended the sleeve for exercising. I had a bad flare up and so we added wrapping for 23 hrs a day until it went down and then wrapping at night as needed. The trunk LE is not improving so they recommended the flexitouch system. Has anyone ever used? If so, what do you think?

Binney4

Hi, mom10!

I'm wondering if you've been able to do self-MLD? If not, that would be a better first step toward getting the truncal LE under control. Also, what have you tried for day and night truncal compression? A night garment from Solaris or Jovi can really help (I can't manage my truncal swelling without it), as well as a well-fitting daytime compression cami or bra. If what you're currently using isn't helping, there are LOTS of other garments to try. One other really helpful strategy for stubborn truncal LE is the Lebed exercise DVD--especially the opening section. My kids have it memorized from doing it with me, so it's fun (even if sorta nutty) and can be shared with all those ever-moving bodies grinning out of your avatar. But the point is, it really does move the fluid in the chest area--yes!

I do have a Flexitouch and, while I like it, I only use it for flares because quite frankly it's difficult to make time in the day for a full hour of captivity to a machine. (The reason I have a Flexi at all is because my LE is bilateral and when it's flaring I can't do bilateral self-MLD effectively--or at all, actually...).  I'm mom-to-nine, though most of ours are grown, but I can't even imagine trying to use a Flexi regularly with the demands of a household full of kids. You'd lose out on too much. JMHO

Gentle hugs,
Binney

toomuch

Momtoten - I can't imagine having nearly enough time in the day to effectively manage trunk LE with 10 kids! I agree with every thing that Binney said above. A compression cami in the daytime and at night time with swell spots in place help me to manage my trunk LE with daily MLD. But I had a stubburn area under my arm that I couldn't get under control and after 2 years, I got the flexi touch. I usually fall asleep with it on at night and I admit my sleep is interupted because I wake up at the end of the cycle and then have to take it off and put on my night garments. So, there are trade offs but it does move the LE from under my arm. I think that it's a good tool to have when nothing else seems to be helping. I lost my Lebed DVD before I used it very many times. After reading Binney's post, I think I'm going to purchase another copy!

jsfaith3

I have the flexi touch system!  It is quite a contraption but it has worked wonderfully for me.  I have LE in my left arm that started 4 months from my double MX with 28 lymph nodes removed, no reconstruction.  I went to my PT for 6 weeks and only found my LE to get worse (mostly because of my bone structure-I have very small wrists so the wrappings pushed the fluid down instead of up my arm so my wrist and hand would swell miserably).  My husband finally convinced me to at least try it.  It is kind of a hassle but it feels good and for me it has been a blessing. It does take some time but I found that my husband and 3 kids were more than happy to make it an "event" of helping mom feel better.  I only have to use it when my LE flares up but it has helped me to get it under control when needed.  I think that it would be even more benificial to someone with trunctal LE.

momtotenkids

Wow thanks for the information everyone! I am having trouble with the trunk LE. We cannot get it down. I am also having trouble finding a comfortable compression cami. Everything I have tried seems to make it worse. I am just went through therapy and got my hand and arm under control or so I thought. I woke up this morning to swollen fingers. I will have to try and wrap my arm this evening. My husband usually does it for me but he took the kids out of town for three days to give me a much needed break.

Lainey64

I have LE in my left arm.  While the swelling has not been that bad, I have aches and pains especially at night.  I got my flexi-touch last week and have been using it almost every evening.  It is a crazy contraption and takes a bit to get into but once settled in, it feels so good.  It is an hour commitment but worth it.

momtotenkids

Thanks Lainey64. It is going through the insurance process now so hopefully I will get it soon.