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GRRRRRRRRR I HATE LE..........

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Comments

  • KittyDog
    KittyDog Member Posts: 656
    edited February 2013

    I got this off of I think a link from one of Lymphedema Guru's post.  It want help with past volume but you can kind of keep up with it at home on your own.  They also have one for legs.  I think I will start trying to keep up with mine better.

    http://www.armvolume.com/

     

  • gmafoley
    gmafoley Member Posts: 5,978
    edited February 2013

    Purple - I really think after my experience with my BS - They think if you have LE - its there fault and you know surgeons are perfect.. My BS kept telling me, "I just took out one node - you can't have LE"

  • carol57
    carol57 Member Posts: 1,550
    edited February 2013

    Purple, I thought that at MGH, they are now doiing pre-surgical baseline measures for all breast-surgery patients, using a perometer, and re-measuring with the perometer at every post-surgical followup appointment. Did you have that experience?  And if so, I'm very surprised that there was no information given about LE, and especially your measurements. They are supposed to be one of the ground-breaking facilities for LE surveillance, although I do not know exactly when that program started. It does not sound like you were given what was described to me.

  • Leah_S
    Leah_S Member Posts: 1,929
    edited February 2013

    I'm pleasantly surprised by what happened when I had my bone scan today. The last one I had I got the injection through my port. However, since no one in that dept is trained to access a port, I had to go to the chemo ward to have the nurse access it. Since it was a busy day I waited almost an hour until someone was able to do it (they weren't just putting me off, I could see how crazy busy it was). So today the tech said it would be a shame for me to have to do that again, he's fine with injecting it into my foot.

    That was the good thing. Then I got the injection. OOOWWWW!!!!!!!! Next time - Emla here I come.

    Now let's hope I'll also be pleasantly surprised by the scan results.

    Leah

  • Marple
    Marple Member Posts: 10,154
    edited February 2013

    ((((Leah)))) good luck with results.

  • purple32
    purple32 Member Posts: 1,767
    edited February 2013

    YES, Carol.

    I got the measured by perometer ( was never ever told what they were for !)  I was just asked if it was ok to measure as it would help with a study and so I said yes)

    Was NEVER given measurements  until today.

    The BS called me back today.  She gave me some measurements , although she clearly said she  spoke to the ppl. who measured me with perometer because she said she did not understand the % differences ( shouldnt she ?!)
    So she told me the figures in ml.

    I asked, and I quote:  " Shouldnt the ppl. that measured me have told me of the increase at the time?"  ( I specifically asked it that way BECAUSE I did not want to say : " Why didnt YOU tell me ?"   Or sound accusatory.  IF she had said yes,that  they should have informed me,  I was merely going to suggest that it would be very very important to give a brochure  and perhaps a talk  for risk reduction etc ...

    In any case, and here you will lose in the  inflection and tone, she replied: " NO!  It's not their responsibilty ...they are just the ppl who measure !"  It was said in a very  exasperated manner.

    Naturally, that begged the Q ...then whose responsibilty is/ was it ?  The Q did not get asked.  It sat there in the pit of my stomach, while I made MRI appts.  I felt bullied, belittled and I felt like I was a pest- a thorn in somebody's side.

    And now, because of me, the next person will feel exactly the same way.

  • purple32
    purple32 Member Posts: 1,767
    edited February 2013

    Kittydog

    Thx for that. ( www.armvolume.com)

    I wish everyone here would take the risk test.  When I did , I was at 7 %.  Then, when I entered in the info that I was swollen at 3 weeks out , it went to well over 30%. 
    THIS is why DR. someone should have told me.  THIS is why !

  • spookiesmom
    spookiesmom Member Posts: 8,178
    edited March 2013

    I saw the PT and agreed to continue. He will re measure my arm next week then will check into day and night garments. And a gauntlet

  • gmafoley
    gmafoley Member Posts: 5,978
    edited March 2013

    Warning to all that take this too lightly - I have been too lax on my MLD and sleeves (mild LE) - Woke up about 1am with my right arm just aching - I haven't felt that in over 2 months - MLD at that moment and then sleeves back on this morning - sure wish I could afford a night garment..

  • Marple
    Marple Member Posts: 10,154
    edited March 2013

    Oh nuts Gma!!  I hope things are under control soon.  There is no doubt that many of these products are horribly expensive and without insurance or an unlimited bank account they are not within everyone's reach.

  • gmafoley
    gmafoley Member Posts: 5,978
    edited March 2013

    I'm achey but no visible signs of swelling except for my elbow (had surgery long time ago and fluid seems to pool there) and a bit in the underarm.  I will be ok - just a dang reminder to get me back on track.

  • Cindyl
    Cindyl Member Posts: 498
    edited March 2013

    GMA - my let has me trying this

    http://www.lymphedemadepot.com/products/solaris/swell_spots/selections/SP-09_breast/

    I slip it into an oversized sports bra and sleep in it.  It's much less expensive than a full vest type garmet (I think she said about $50) and seems to help... maybe you could find something similar that would help your particular swelled spots?

  • proudtospin
    proudtospin Member Posts: 4,671
    edited March 2013

    Cindy, that looks like something I could use, thanks for posting

  • binney4
    binney4 Member Posts: 1,466
    edited March 2013

    That swell spot is made by Solaris, and at the site you linked to it's in the $66 range, so BE SURE to shop around.

    LymphedemaProducts has the same item (SP-09) for $44.90:
    http://www.lymphedemaproducts.com/products/breast-swell-spot.html

    At NorthAmerican Rehab it's $44.50:
    http://www.northamericanrehab.com/store/shop-products/breast-swell-spot.html

    At BandagesPlus it's $34.95:
    http://www.bandagesplus.com/prd/152/680/Breast-Swell-Spot.html

    BrightLifeDirect, which is often our go-to-place for great prices is unfortunately higher on this one. It's $52.51:
    http://www.brightlifedirect.com/breast-swell-spot-sp-09.asp

    My whole point, of course, being--yeah, this stuff is way expensive, but the range of prices is also huge, and there's no predicting who will have the best price, so LOOK AROUND!

    <Sigh!>Undecided
    Binney

  • Cindyl
    Cindyl Member Posts: 498
    edited March 2013

    Yeah. My LET "gave" me mine and said they'd bill my insurance what the spot cost them, so I didn't worry about it.  But the prices certainly do get interesting in a hurry.

  • Maxine58
    Maxine58 Member Posts: 23
    edited March 2013

    GMA - I just purchased that exact model of swell spot online at http://www.lymphedemaproducts.com/products/breast-swell-spot.html  for $44.90.... When you sign up you get 10% off so with shipping it came to $46.95 total.....Look for an online coupon code that may get you free shipping no matter who you choose....  Best money I have spent so far..... I wear it at night under a compression shirt that is a size larger than I normally wear for compression (bought at TJMaxx in clearance) and it really keeps the swelling to a minimum. Wish I had found the swell spots a year ago. Hope you find the right one for you!

  • gmafoley
    gmafoley Member Posts: 5,978
    edited March 2013

    GREAT NEWS!!!!! - All my surgeries and LE Therapy bills have been covered 100% by my medical center!!! There definitely is a God.. We were down to our last penny and we got the news today.. Only covers the back bills not the future bills but WOW.. 

  • PinkHeart
    PinkHeart Member Posts: 271
    edited March 2013

    Gmafoley,

    So happy for you. Blessings!

  • proudtospin
    proudtospin Member Posts: 4,671
    edited March 2013

    GMA, you deserve the help!  glad you can be clear at least for now

  • binney4
    binney4 Member Posts: 1,466
    edited March 2013

    Gma, yee-ha!Kiss This calls for some serious chocolate!
    Enjoy!
    Binney

  • Marple
    Marple Member Posts: 10,154
    edited March 2013

    Gma, so happy for you.  Sometimes good things DO happen to good people.  Hugs.

  • proudtospin
    proudtospin Member Posts: 4,671
    edited March 2013

    ooo, I saw a commercial today for some lovely new chocolates, let me blimp some over to you for celebration

  • gmafoley
    gmafoley Member Posts: 5,978
    edited March 2013

    :-) I'm still in shock.. They denied us the four times before, so it didn't look good. I can now at least move on with my new treatments and bills.

  • Cindyl
    Cindyl Member Posts: 498
    edited March 2013

    Such a relief for you GMA!  I worry so about people who don't have insurance coverage, everything is so expensive even with coverage.  I'm still paying on my deductables and copays and my insurance was surprisingly generous on some things.  My cancer center accepts what the insurance pays (after deductables)  So since my surgery more than covered my deductable, I've never seen on bill from the cancer center... that includes both oncologists and radiation. (of course that doesn't include things from the main hospital, like pt, let, imaging, the surgeon, and the surgery center, and on and on) And of course now there's the Eye clinic and the surgeon and... Money Mouth but nothing that I won't eventually be able to get taken care of.  This whole process has been a giant pain, I can only imagine how odious it would be if I had to think about how I was going to pay for every treatment.

  • purple32
    purple32 Member Posts: 1,767
    edited March 2013

    Yaaaaaay!!!!!!!


    GMA
    I am SO so happy for you. That IS great news.

    ~Enjoy the moment! Cool

  • Kay_G
    Kay_G Member Posts: 1,914
    edited March 2013

    Very happy for you GMA.



    Grrrrrr.. I have no idea what happened.two weeks ago I went to my LE and got measured for a new garment. My right arm was 7% larger than my left. I figured it was what it was. Went back last week to pick up the garments and my arm ballooned to 19% bigger than my other arm. I really don't know what happened. Now I am to go back to being wrapped again. Grrrrr.

  • hugz4u
    hugz4u Member Posts: 1,818
    edited March 2013

    GMA, That is the best news you have got in ages. I am so excited for you. A round of ice cold chocolate milk in a martini glass for all.



    I vacuumed the car then washed it today. I now have a achy arm. I think this merits a night to practice wrapping. Hopefully that will help. Drinking water and elevated as soon as I finished the job. Grrrrrrrrrrrrrr.grrrrrrrrer.grrrrrr. I just wanted to save 12 bucks by doing it myself and now maybe I will spend more money caring for that arm if it doesn't smarten up. Grrrr. I am no expert in wrapping yet. Ducky is. DUCKY....... I need you to come over and wrap me! I should have just went for my walk instead.grrrrrrrrrr.

  • binney4
    binney4 Member Posts: 1,466
    edited March 2013

    Kay_G, what a bummer!Frown I'm so sorry to hear that. I hope you and your therapist can put your heads together and figure out what the problem is, and come up with an way to keep it from happening again. Would Lebed help? A simple exercise change? Or is this weather related? A salty ham sandwich and chips?

    Personally, I find unexplainable flares (or even explainable onesTongue Out) distressing, and I get way sadder and more upset than seems reasonable (even to me!) So if you're finding yourself feeling the same way, please do give yourself some room. You really will get it under control again, but in the meantime go extra easy on yourself. Hang in there!

    Gentle hugs,
    Binney

  • hugz4u
    hugz4u Member Posts: 1,818
    edited March 2013

    Kay, if it helps I am in wrap now, We can cry together but then we have to put our big girl panties on and figure out what works for us. grrrrrrrr for you and a big sloppy kiss which I don't give out often! It will get better, we just got to persevere. p>

  • purple32
    purple32 Member Posts: 1,767
    edited March 2013

    Grrr...hughz!!!!!!!!

    Give me your address and I will mail you $12.00!

    Don't do that again . Called it !Yell

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