Flexi-touch - Who decides when it is time to start using one.
I have been receiving treatment for Lymphedma since March. I seem to have it all over, my arms, my trunk and my legs. Who decides when it is time to seek additional treatement such as a Flexi-touch.
Comments
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Ellen, you can request more information from your therapist about other treatment methods (Kinesio taping, Flexitouch, non-elastic garments, etc.) at any time. If she doesn't have experience with something you bring up, perhaps she'd be willing to contact other therapists in your area that do. In the case of the Flexitouch, you can request a demo at your therapist's office, or even at home, and your local rep will schedule it for you.
Using Flexi with multiple limbs affected is a bit of a trick, because like the MLD, the point is to bring the fluid up out of the limb and back into circulation. In other words, fluid from the arm is brought into the trunk, specifically across the chest to the opposite axilla. If you're bilateral, then you have to be sure it's NOT directed to the opposite axilla, which means you have to limit the compression at the chest and at the same time do some self-mld to direct it to the neck nodes (or down to the groin if your legs aren't involved). When your legs are affected as well (one of mine is too), the movement is up out of the leg into the groin/abdominal area. But you DON'T want to direct it into the abdomen if you have upper body swelling, because you don't want it moving upward and overloading the nodes in the lower part of the trunk. (Is this making any sense?!!
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It's taken some doing, but I can use the arm/chest garments if I'm lying flat (so it doesn't "migrate" to the abdomen) and if I do some pre- and post-mld to direct fluid to the neck nodes (while padding the upper chest to keep the pressure from moving fluid toward the opposite axilla). I can use it on my leg only if I'm propped upright a bit (to discourage the fluid from moving too far upward), and only early enough in the day so I won't be lying down anytime soon (so it doesn't "migrate" up into the truncal area)--and I do some pre- and post-mld to clear the abdomen and groin nodes. So it's complicated. Self-mld is more flexible than a pump as far as where you're directing fluid, but with that much involvement whole-body self-mld is almost too daunting to think about, so the Flexi can actually help. Also, though different brands of pumps work better for different situations, in your case (like mine), a Flexi is a wise choice because it's less agressive than the others and we need to work gently so we don't create more problems.
I just re-read what I wrote, and I sure hope it's understandable! All that just to say YOU decide if you want to try something else, and you may have to seek out the therapists in your area who are most experienced.
Keep us posted!
Binney -
Thanks Binney
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Hi Eileen, I was diagnosed with mild LE in June. At the time, my therapist mentioned that some women find the pump helpful but at the time my mind wasn't going to go there. I guess I wasn't mentally ready to accept that this was real. So I learned MLD, wrapped and got my sleeve and figured I was done. Well lately my arm has been aching a great deal. No noticeable swelling but the pain is really bothersome. A couple of days ago I emailed my therapist and asked her about the pump she had mentioned previously. She referred me back to the contact at Sunmed who got me my sleeve and that got the ball rolling. Within 24 hours I had someone come to my office and give me a demo of the Flexi-touch. In my case, they are taking care of getting the script, paperwork, insurance authorization and all of that done and hopefully I'll have my pump in a couple of weeks. So my advice would be to contact your therapist or whoever you've been seeing, and go from there. Good luck to you!!
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My therapist mentioned this early on as I was unable to really do a full hour of MLD because of fatiguing the left arm and getting overuse problems there. I was told the insurance would review it only after having at least a month of failed home therapy after dismissal from LE therapist, and then only 60% were approved, and I didn't want to wait that long, so paid out of pocket. They have a 30-day money-back guarantee for the machine, but not the garment. I use it twice a day, and although I do not find much improvement in measurements, it is very comforting to my upper arm that aches so much by the end of the day. And I did try the machine at the LE clinic - the rep came there and went through the whole thing. Then after the machine arrived, they sent a trainer to my home to help me and my DH to learn how to use it (she is an OT and certified LE therapist), and there is also a great DVD that comes with it.
I have a question for any other FlexiTouch users: I have rolled the sleeve into the cone as snugly as I can for hand and wrist, looser above, but it still makes my hand swell. I can have the swelling down with a glove so that I can even get my rings on (I never leave them, just use it as a guide as to whether whatever I have used for my hand is helping), but after FlexiTouch the fingers are back to sausages. I tried using a glove once to keep some finger compression, but nearly got some blisters between a couple fingers, so don't want to do that again!!! I was wondering if wrapping the fingers with gauze would help, or if there is some adjustment to the hand/sleeve garment that would help.
Also, I have been somewhat lax about doing self MLD of the neck and supraclavicular areas, and that is something I think I should do, as well as the opposite axillary area. The garment really does a good job with trunk/core, and back, which I don't do as well.
Ellen, wishing you good luck!
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