What to do while waiting for new LE eval appointment

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Lee7
Lee7 Member Posts: 657
edited June 2014 in Lymphedema

I know I waited too long to call the doctor to ask for a referral back to therapy and the first available appt was 5 weeks away.  I go on June 25th.  I do keep checking with them for any openings sooner.

My arm has really swelled up so that I can't stand wearing my compression sleeve. I don't think the MLD I'm trying to do is doing anything. My swelling is the worst around my elbow, and if I press on a spot it stays indented. The past few days my hand and fingers have been tingly like the circulation is getting cut off.  I'm not running any fever or have any redness on the arm but it really aches.

So, I'm trying to be patient but I'm getting afraid I should be doing something and I don't know what's best.  Any suggestions?

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  • kira66715
    kira66715 Member Posts: 4,681
    edited June 2012

    Lee, is this a sudden swelling? If so, please have the doctor check you to make sure there's no chance of a blood clot--rare, but it happens.

    I would not wear the compression sleeve if it no longer fits.

    We have a page on SUSO on waiting for the appointment, and it mostly involves, elevation--which should help with pitting edema, and deep breathing and hydration.

    http://www.stepup-speakout.org/How_You_Can_Cope_with_Lymphedema.htm#while%20waiting

    The more I think about it, the more I think even the PT would want a doctor to check you out--just to be safe and get cleared for treatment.

    Please let us know how you're doing.

    Kira

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited June 2012

    lee7 - sent you a PM!

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  • Lee7
    Lee7 Member Posts: 657
    edited June 2012

    Kira,

    Not sudden, but the pain has been getting worse.  I did see the Rad Onc's nurse practioner last week and she thought it was just the LE acting up, no infection.  I might give her a call tomorrow to ask about clots...just in case.

    I'm heading over to the stepup site, I've read some of it but I know I need to read more.  Thank you for reminding me about it. :)

    Lee

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  • Binney4
    Binney4 Member Posts: 8,609
    edited June 2012

    Lee, I'll second that: likely even if you could get a PT appointment tomorrow they'd send you right back to the doctor first. So short-cut the process and do that now.

    But I also want to encourage you not to get overly worried, as there are many things that influence our LE and our ability to control it. Even such "insignificant" things as this early summer weather.Tongue out Kira and I have talked about how despairing we become when our LE flares and we lose control. It's an emotional reaction that seems all out of proportion, so it's been comforting to us to know that others here also find flares alarming and depressing, but we eventually get that control back again.

    As soon as you have the doctor's okay, you can continue to work on self-MLD. Just a thought: One problem I have when I'm flaring is that I do it waaaaay too fast and too hard. The lymph system is "slow and stupid," and we have to humor it by setting up a very slow rhythm to match its lazy pace. And our strokes need to be kitten-petting gentle so we don't "squish" the lymph vessels that are delicate and lie just below the skin. That's very hard for me to do when I'm frustrated and anxious. A quiet time when I won't be interrupted, a scented candle, some quiet music all help me slow it down and get it right.

    Doctor visit first, though.

    Did I mention I hate LE?!YellTongue out

    Keep us posted, please, and let us know what you discover. Gentle hugs,
    Binney

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  • moogie
    moogie Member Posts: 499
    edited June 2012

    Ask for an RX for instruction in wrapping when you get to PT.It takes practice but is worth  the trouble.Wrapping would be good right now if you know it is just a flare and not a clot/infection. It is a thing you can do yourself to help pump out fluid.

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  • Lee7
    Lee7 Member Posts: 657
    edited June 2012

    A quick update, there was a cancellation and I am going to be able to see the LE therapist this Wed!! My doctor is at the same place so I can be checked out at the same time.  :)

    Just knowing I can be seen sooner has relieved some of my fears about this. I appreciate all the good advice here so much.  Thanks!!

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  • Binney4
    Binney4 Member Posts: 8,609
    edited June 2012
    Hey, hey! Very good news!Smile Do let us know what you discover,
    Binney
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  • Lee7
    Lee7 Member Posts: 657
    edited June 2012

     Well,here's what I found out when I saw my new LE therapist. My arm has increased atleast 2 cm since I was measured in Nov. but she thinks its still early stage and with proper treatment I can get it back down some. She didn't see any signs of infection but she confirmed what I've suspected about having nerve irritation/damage running along side the cording in my arm. It is the cording causing most of my pain.   She wants me to do only 3 stretching exercises for now and to wear my lighter compression sleeve during the day. They are very busy, so my therapy sessions won't start until July.   I'm hopeful I can get this thing under control.   :)  

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  • hugz4u
    hugz4u Member Posts: 2,781
    edited June 2012

    Lee:  Your original post say you are a having tingly hand. Are you wearing a glove or gauntlet? If you have any weird sensation in your hand, it could be that you are not wearing a glove. The fluid is being pushed to the hand. Just a thought.

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  • Binney4
    Binney4 Member Posts: 8,609
    edited June 2012
    Whew! You're on your way to getting everything back in control!Smile Glad to hear there's no infection. Onward!Cool
    Binney
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  • Lee7
    Lee7 Member Posts: 657
    edited June 2012

    hugz4u,

    I don't have a glove or gauntlet for my hand, but when I saw the therapist she didn't think I had any swelling in it.  Her thoughts was the tingling is my nerve irritated by the swelling at my elbow and the cords stuck  in my armpit scars.  I had two surgeries there. One for the sentinel node biopsy, and the second was for the full node dissection. I have lots of scar tissue that's stuck I guess.  I will ask her about getting a glove.  I would like to have it in case I need it.  Last time I needed to order the sleeve, it took 6 weeks for my insurance to sort it out so I could get it.  Next time I will just buy the sleeve and deal with the ins. co. afterwards. 

    On another thread, was discussions about prices of services for LE.  I was shocked about the differences and  then I was just mad because I found out the sleeve I have can be bought on line for about 80.00, and the place my ins. co. made me go charged 247.00 for the exact same item. Same brand, same everything.  It really makes me sick that some companies are making lots of money off LE.

    Binney, Thanks ! I'm learning to deal with this LE stuff. I'm so thankful for all the good info here.

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