Might be getting flexitouch!

allisontom911

Hi Everyone,

I am having a heck of a time with my LE. We know it isnt cancer since my recenet scan came back clear!!!!

My therapist thinks it is may chemo making things flare up, she said she has seen that in a few patients. I have no cuts, no infection, MLD is not working and Lebed is not working. We did a pump 2x last week and my hand/arm was better right after but then came back the next day or so. My hand is so swollen I can almost not make a fist.

So she submitted for a flexi touch and this wednesday the rep from flexitouch is meeting me to show me how it works and see what I think. She said she is pretty sure my insurance will ok it. Especially since this is goign to be an ongoing thing and i am so young. I hope insurance approves it!!!!!

Binney4

Allison, do let us know how the demo goes--very hopeful! Ask all the questions you can think of, then relax and enjoy!

Be well!
Binney

Anonymous

Allison, I have a flexitouch and LOVE the heck out of it.  I will say, if your co-pay is high as mine was aske for a co-pay waiver! Mine was approved the day they received it.

allisontom911

Thanks Binney and Lory!

Lory quick question for you, I have met my co-pay/out of pocket for the year since I am doing chemo again and have had a zillon scans  but I am afraid insurance is going to decline it anyways. I was hoping they would work with me on a price if I were to just outright purchase the flexitouch.

Does anyone know if it is common to have a flare up during chemo?

Binney4

Allison, the taxanes do cause swelling and can overload the lymph system in those of us who are compromised.

You'll need to appeal when your insurance declines. Flexi will help with that, so ask the rep to take that on for you. They know the ropes.

Keep us posted!
Be well,
Binney

Kicks

LOVE my Flexi-Touch! Got it in Jan 2010.



Can't help you with info on cost or co-pay. VA got mine for me.



The only 'thing ' that has happened with it is when I had it about 10 -11 mths, some of the sections 'blew out' (went together) and I called them and had a new on 2 days later. Today I called to talk to them because I have lost a fair bit of weight and the body part ks a bit too big now. Even though they don't have to, they are sending me a new smaller one Y should be here Fri.

allisontom911

I had my demo yesterday with the flexi-touch rep. My LE therapist was there too of course. It was awesome. We saw a decrease in everything but my wrist. Over 1.5cm decrease which was awesome. I could see my knuckles...lol

So they submitted everything while I was in the office, got my Drs signature on the script and so on. Got the call today that my insurance already approved it...OMG in 24hours we had approval. 100% covered because I of course have met my out of pocket and co-pays since I am doing chemo. I am beyond excited. When flexi-touch called me today to verify my address I was almost speechless. She said I will have it by Monday then someone will come to my home and set it all up.

Yiiipppppeeeee. Whhooottt whooot.....just had to share my good news

BeckySharp

Allison--Great!  Happy to know you did not have to jump through a lot of hoops to get it!

Lee7

I'll be going back to PT shortly because my arm has increased in size again.   I have been wondering if I should ask about a pump like this.  I think it is similar to the pump they had at the clinic and it did some good at the time.

What can you recommend about pumps? Is this the one to get?  

Lee7

Me again... I had my eval yesterday and the therapist I went back to does use the Flexitouch. She said she will recommend this for me.   I have no idea about the cost.

A coworker has a BioCompression brand pump, and the sleeve looks very different.  We have the same plan so ins.  may want me to get that brand. 

Any other advice about this?

I did read the BCO page that explains the pumps. Seems like the experts have differing opinions.....  

I don't know yet if I'll even be able to afford the copay but if this is worth it for my LE then I'll try to work out something.

I appreciate any input. Thanks!!

Hildy910

Strangely enough, I tried a compression pump this week at my PT's office. It was a VES 5200, which she likes because it has 10 compression chambers and does a graduated compression starting with more compression at hand/wrist, and decreasing as it moves up the arm.  I think it started at 45, and by the time it got up to my upper arm it was at 30. Is that how they work in general? I have to say, I thought this was helpful and am thinking about getting one if my insurance will pay, but maybe I should be looking into the Flexitouch too. 

Here's the one I used: http://www.innovativecompressiondesign.com

Lee7

Hi Hildy,

Thanks for responding. I looked at the website but I didn't see any pictures of what the sleeve looked like. If you want to look at the Flexitouch or the other one I saw, the lymphedema page here on BCO has the links at the bottom of the article and they show the sleeves.   http://www.breastcancer.org/treatment/lymphedema/treatments/pumps

I don't know about the compression settings but I will be asking next time I see the therapist.  I don't go again until the 21st because they are so booked up.  Its very hard to get LE appts where I am so that's a reason I would like to have a pump at home.

Binney4

Lymphedemahelp, you're a pump supplier, right? Have you read the rules regarding participation on this website to be sure you're not in violation of them?

Hildy910

Lee, the sleeve on the VES was quite large and bulky--looking at the Flexitouch on Web pictures, it looks much smaller, but I have never seen the latter in person.  However, I plan to ask my PT about it, b/c it has more chambers, for one thing. 

Binney4

Hildy, the VES pump is the "new kid on the block," developed recently by a therapist who (JMHO) appears to have her own enterpreneurial interests at the top of her priority list. She has long had a business "training" LE therapists with a particularly lacking short course, and some of us have had the misfortune of running into these under-trained therapists. She now has this new pump business, and she claims there has been research done with it to show its effectiveness, but she has yet to produce the results. I have heard her brag that the engineers she hired to create her pump had never even heard of lymphedema, which she says is an advantage because that way they'd have fresh ideas. Helloooo?!! Lymphedema is a whole lot more than a plumbing problem, so if it were me, I'd want a pump developed by people with a passion for LE and a deep working knowledge of its dynamics.

Just by way of balancing this rant, I will say that I have seen a therapist who was trained by her who actually became an excellent practitioner, principally because she's the sort who keeps on learning on her own.

All that just to say you might want to do your own research on this. As far as the research is concerned, Flexi has a lot behind it. No pump is standard treatment--they are just a substitute for home self-MLD. Therapists should be doing hands-on MLD during LE treatment appointments, not relying on pumps. We're paying for their skill and experience, which can only be of help to us if they're using their own hands to assess and manipulate our actual skin and tissues.

Like I say, JMHO.
Binney

Hildy910

Thank you so much for the input--I will certainly do further research. Just to be clear, I'm the one who pushed to try the pump, not my PT. she does weekly MLD on me, as well as working on my cording and scar tissue.  I'm just having trouble finding maintenance at home that works.  Either I stink at MLD, which she taught me, or it just isn't working, so I thought I'd explore all the avenues in search of a routine that does work. I'm still having trouble with gloves, too.

Binney4

Hildy, brava for exploring all your options! I, too, stink at self-MLD, but I find a daily Lebed routine really does the job for me. Only takes 15 minutes once (or twice) a day. I'm bilateral too, so Lebed works on both sides at the same time and spares me a looooong self-MLD routine. But we're all different, and finding what works best for you will serve you really well on-going. Keep us posted, please!
Gentle hugs,
Binney

purple32

Binney

Are you saying that you dont use MLD at all?!

Lee7

I guess I stink at MLD as well or else it just doesn't work for my arm either.  When I did go to this therapist before...for over 2 months, the sessions of MLD she did didn't reduce my arm.  Honestly this new eval with her was really dissapointing.   I should look at the Lebed video. I haven't done that yet. 

Hildy910

I would really like to try Lebed, too--there was a class that was supposed to be running at my local hospital, but I don't think it ever got off the ground.  

purple32

Hildy

You can check out ALL the segments of the LEBED video , one pc at a  time ( a little tedious that way) by doing a search on youtube.

Please PM me if you are coming into the area ...we can meet if you'd like.