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Spookiesmom
Spookiesmom Member Posts: 9,568
edited July 2014 in Lymphedema

I've pretty much ignored my arm for almost 2 years. I did see a LEitist right after surgery, it was a disaster. Total waste if everything. I have 2 sleeves, a hideous night contraption, none of which I use. 

So now the swelling and heat is bothering me. I want a pump. 

How do I go about getting one? Which doc will order it? Mo, PCP, a new LEitist?

For those that have them, do you like it? Or not? Why not?

Thanks!

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  • Moderators
    Moderators Member Posts: 25,912
    edited July 2014

    Hi Spookiesmom,

    We're sure the others on this forum will chime in shortly, but in the meantime, we wanted to point you to the main Breastcancer.org site's page on Pneumatic Pumps for Lymphedema, which has some great information about how pumps work, who to talk to about getting a pump, and who pumps are best for.

    There's also some great information on other types of Lymphedema Treatments that you may want to consider.

    We hope this helps!

    --The Mods

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  • hugz4u
    hugz4u Member Posts: 2,781
    edited July 2014

    Spookiesmom,  cool name. Are you the one that posted a really cute dog named that once.?

    yup, your  right those garments are UGGGGGly, annoying and bothersome. A pump would be great if it could take care of all our LE needs but it is only a component of our LE treatment. MLD from a certified therapist drains our affected areas( yah I know, I would rather be painting my nails!)LE gear(that ugly stuff) contains our swell so once you get your swelling down the sleeves etc should keep it that way. And wrapping with short stretch bandages is the gold standard for reducing size and even pain.

    Fortunately lymphedivas brand sleeves and gauntlets and I hear one day, gloves are pretty garments for the fashion minded and so I hope you measure up to fit those. Unfortunately they are not the best for for me:( It is necessary to wear the compression stuff or we will just get more pain, swelling and fibrosis which is a nasty beast. Do watch out for bug bites(scrapes, scratches etc) and treat them right away with antibiotic creme and a bandaid so you don't scratch because if you get cellulitis it is very life threatening.

    Go to stepup-stepout.org for finding a qualified therapist. I am curious what kind of a LEist disaster did you have during treatment? 

    We would like to help you? I know this is not what you want to hear and none of us love or even remotely like LE but we have it and we just have to take one day at a time and try to improve our LE lives. Yup .....we all still cry about it and have our rageful moments but these threads are a life saver for support because the general public has no idea what we are dealing with.

    A wonderful thread to crank out on is the grrrrr thread where we all post our LE feelings. It helps us mentally heal and I encourage you to go there and rants away.  Meanwhile keep posting your questions for us.

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  • Spookiesmom
    Spookiesmom Member Posts: 9,568
    edited July 2014

    Yup, Spookie is in my avatar!

    I've bee ignoring this for almost 2 years. Have been on the LE threads in the past. Was originally sent to an LEist close to my center. Guy did MLD, never really showed me how. Ordered a sleeve, gauntlet, and hideous night thing, then pretty much abandoned me. Went on vaca too. I was LESS than pleased. 

    Went to a different place, got different sleeve, glove, insurance said it was the same. Was different mfg, size, material. They refused to pay. 

    I was over all of it. 

    But this year seems to be bothering me more. The arimadex hot flashes, Florida heat and humidity. Ugh. Plus, I'm a slug. I could sit for an hour with the pump. 

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  • vlnrph
    vlnrph Member Posts: 1,632
    edited July 2014

    I was pre-approved for Tactile System's FlexiTouch last fall then had to fight to get payment! I complained to our state insurance commissioner's office and was sent a check within a few weeks (after waiting for almost half a year: I did have the machine during that time). There was an at home trial which convinced me it would help. Measurements taken before & after showed nice reductions. 

    It was shipped quickly once we had the authorization and a therapist came to the house to set me up. I used it daily for several months but did not take it on vacation. My night sleeve often gets too warm. The last thing I need is a sweaty arm that leads to another infection.

    Deep breathing and water exercise are other control methods that I use. Do consider all your options.

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