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Topic: Have you heard

Forum: Lymphedema —

Talk with other about how to lower your risk of lymphedema and how to manage it if you've been diagnosed.

Posted on: Jun 1, 2006 02:02PM

trixiegram wrote:

about a massage garment called "Flexie Touch"? (May have spelled Flexie incorrectly) I started LE PT Tuesday because I can't use right arm at this time and my left arm is swollen. Today, my therapist, told me about this garment. She said, it can do massage for those that can't do it for themselves. Has velcro fastners so it can be adjusted for different sizes. It does gentle massage, in sequence - neck, under other arm,chest, sides, groin, etc... I don't know all the ends and outs of it yet but am supposed to be able to go to an "inhouse" demo next Monday. Some ins. companies have paid to buy it for those patients who qualify medically, who can't do massage for themselves. Although I can't do mine now, since that hopefully is only short term, probably wouldn't qualify. The garment is really pricey - about $10,000. You read it right - no typo - Ten Thousand! YIKES! My question is this - why invent it, if few, if any patients can afford to buy it? But doesn't the concept sound neat? My arms and hands get so tired doing all those massages. Next to having private LE masseuse ( like when I win the lottery ) this sounds next best option.

Anyone el;se heard of this?

Will post when I learn more about it.

Your life can be a parade. Just watch out for the elephants bringing up the rear!
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Jun 1, 2006 04:04PM Binney4 wrote:

Hi, Niki,

How IS your other arm/shoulder doing? I keep thinking about you but haven't run into any post about it (don't get around the other boards too much). Hope things are moving forward (never fast enough, though, for sure.)

On another LE site a woman tried the Flexitouch and we corresponded by email about her experience with it. Their website, BTW, is and they call it a Manual Lymph Drainage Simulator. This woman's therapist arranged for her to try it in her office with a company rep, and she loved it. So she ordered one, which her insurance paid most of. Once home, she found at first it made her very sick -- her onc and therapist both said that was understandable (?) since flushing out this stuff could make you sick (news to me -- not sure where that comes from). So anyhow, she gave it a break and then went back to it. That time it didn't make her sick, but she found it "harsher" than the demo she'd had at the PT's office, and much harsher than the PT. She concluded with this observation: "Last summer my PT, through daily massage for 3 weeks, removed 3 times the amount of fluid that the Flexitouch removed in any one person."

So she sent it back. Which is not to say it's not a very fine thing, but it sure didn't work for her. This whole scenario played out over a couple of months, and I was rooting for her the whole time, hoping we were on to something completely wonderful. But at the moment, the jury's still out...

SOOOOO! Man, will I be interested in what you think of it! Please let us know all about it.

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Jun 1, 2006 06:06PM gracejon wrote:

This is what is known as a seqeuntial pump. These pumps are the newest and brightest on the market. There are a couple of different companies. My oncologist wanted me to get one last summer but the lymphedema therapist at that time had one she was using in the office/ I used it for one session. It clearly made many dents in my arm that day and really felt good. I did have a discussion with insurance about cost and coverage. The best thing that happened as the weather cooled my edema resolved dramatically and returned to it's fluffy but not overfilled state. I did not get a pump.

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Jun 1, 2006 06:39PM trixiegram wrote:

Thanks for asking about my arm. Still in lot of pain with limited motion. I have consult with orthopedic surgeon tomorrow. Find out his suggestion on whether I need surgery or PT. Am so praying for just PT. But am so desperate to be rid of this horrible pain - will do surgery if I have to, in order to get over this.

As for the Flexitouch - I used your link. Don't you love the womans expression - like she is having facial and being massaged by beach boy?!? I think I will print out yours and Jon's posts and show pt therapist link and see what she thinks. I don't know if I will be allowed to try this garment, next week but can at least watch demo and report back to you about it.

Jon, you said it felt good. Could you give more descriptive account of what you liked about it, in comparision to something else, feeling wise and how easy you think it is to use. Am thinking difference in your account and Binney's friend, as how you liked it and she didn't particularly, may be from different way different companies manufacture it. Be interesting to compare notes.

BTW Binney, congrats on your Five yrs. two months relationship with NED. So happy for you!

Your life can be a parade. Just watch out for the elephants bringing up the rear!
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Jun 2, 2006 04:48AM NPat wrote:

I ordered one for a patient (at the suggestion of the LE therapist) for a patient of mine with LE of her legs. She couldn't bend over to do the massage. She had trouble fastening the boots. The cost was $10,000 and TRICARE paid for it but I believe she is sending it back because of difficulty in her using it. Adrienne, the LE therapist, told me that this was the only option she could think of for her because TRICARE wouldn't pay for the massage but would pay for the pump. Go figure. Sometimes pumps are the best option... I would order one only on the advise of a certified therapist, however.
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Jun 3, 2006 05:44PM gracejon wrote:

Niki, the sleeve was rather large and difficult to manuver by oneself. It would be helpful to have assistance. The pump feels like a gentle long massage and required me to sit still and relax for about 45 minutes. That in itself felt good.

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Jul 1, 2006 11:48AM Binney4 wrote:

This is in response to Jinky's post asking about the Flixitouch: Last I heard from Niki (last week, maybe?) she was awaiting her flexitouch to use on her LE arm. Her other arm is badly hurt from a fall and she's awaiting surgery. (There's a long thread about her on the "Inspirations/Prayers" board.) She can't type right now, so we're not likely to get much news about it for awhile, but I sure pray it's helping her, because no way can she massage with her damaged arm.

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Jul 1, 2006 12:15PM DoreenF wrote:

Niki's been posting again ... she's feeling somewhat better ... but still has the bad arm - she's typing mostly with one hand ... check her posts out in Moving Beyond ... she was there on friday...
"Cancer May Leave Your Body, but It Never Leaves Your Life" - Lance Armstrong Foundation Manifesto. Dx 4/18/2005, IDC, <1cm, Stage I, Grade 2, 0/2 nodes, ER+/PR+, HER2-

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