What should the sleeve feel like?

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MiniMacsMom
MiniMacsMom Member Posts: 595
edited June 2014 in Lymphedema

So here is a little background.  I got my bilat Mast.  on 11/3. drains out on 11/11.  on the appt on 11/11 I asked the surgeon for a referal to get a sleeve since I would be flying, and they had removed 13 lymphs.  He said my risk was so low not to worry about it.  I should have bought one without the referal but I ran out of time before flying to TX for a 2nd opinion. 

Well upon talking to my Onc here and telling him my arm was uncomfortable after the flight he sent me to a Phys therapist specializing in Lymph.  That guy didn't really seemed concerened at first until my forarm and upper arm came back 20% larger on the right (affected side) than the left.... Then the appt when into crazy overdrive to cover everything.  Needless to say I got a glove and a sleeve. 

I am not worried about the fit, but I just want to know what it feels like to everyone else when they are wearing it.  We went to the zoo today and I left it on for a few hours after (wore it to the zoo) at first it felt ok, then slowly it started to feel weird/tingly so I just put my sleeve back on.  How do you know when you NEED to wear your sleeve and when its ok to take it off. 

I have another appt next week to go over more MLD and the wrapping instructions.  I am 27 and fit, so I really really don't want this to get out of hadn :( 

Also, has anyone tried the lymphediva sleeves, I am pretty interested in getting a few, if this is something I should wear alot.  The Phys therapist was LANA cert but he wouldn't tell me when/how I should know if I should wear it or if I should jsut wear it all the time :)

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  • kira66715
    kira66715 Member Posts: 4,681
    edited November 2011

    Well, I'm really sorry you joined the "swell sorority"--but thank goodness the arm measurements were up and suddenly they took you seriously--I am SO sick of this need to minimize LE, and our risk and our reality.

    Now, after that little rant: learning to manage your LE is a steep learning curve and it sounds like you're getting the tools--garments, MLD, learn how to wrap. 

    Symptoms are so important--and they get dismissed (the PT's focus on observable swelling, but so many women have stage zero LE, where they have extra fluid and symptoms and no swelling--but should be treated.)

    Right now, you still just post op, and had the trauma of flying, and are in the midst of a flare. You're doing the right thing--IMO--to wear the sleeve when your arm feels funny or if it swells, or if you're doing repetitive movements.

    I read that you have a toddler, and I'm sure you're active and pick him up and play a lot--so it will be a time of trial and error for now.

    My swelling is mostly in my hand/forearm, and I wear compression when I see swelling, it feels full-and sometimes it gets warm at those times, and if I'm exercising or doing heavy lifting. 

    My LE has changed over time, and so has my need for compression--yours will too.

    Hope others come along with their opinions.

    I know Suzybelle wears the lymphadiva sleeves, and likes the tatoo ones.

    Kira

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  • MiniMacsMom
    MiniMacsMom Member Posts: 595
    edited November 2011

    Thanks for responding.  I guess right now with everything going on, I will wear it most of the time. He did say not to wear it at jnight.  Its a Medi brand sleeve and glove, though I kinda hate the glove, I guess there are gauntlents ? which he didn't have.  where the fingers aren't involved.  I had been watching my had post surgery for signs everyday but I don't have swelling in my hand, its mostly my upper arm.  I felt sore post surgery but everyone just said its from the surgery :( grrr.  Oh well, live and learn. 

    On a side not, down here they have been calling it phys therapy.  Is this lymphedema treatment with a phys therapist always considered phys therapy.  My insurance pays for unlimited amounts of PT, but not massages.  I looked it up and there is a cert LE person back home.  My forarm is 1/2 in larger than the left side and the upper arm is 2/3in.  Measurement wise it doesn't seem like a lot, but how often do you see at PT to get it under control?

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  • kira66715
    kira66715 Member Posts: 4,681
    edited November 2011

    Minimacsmom: LE therapy is considered PT--trained therapists can be PT/OT/and LMT's (but LMT's have trouble getting insurance reimbursement unless they work for a PT)--and the massage component of it is included. Quality varies greatly, so it's wise to check credentials and to also always check in about the "game plan"

    The diagnosic criteria has never been estabished: but the 2 cm difference is often used--2 cm increase in the one arm. Volume can be calculated by arm measurements, and while 10% increase is consider significant, we recently got the guidelines from Northern Ireland that showed that 5 % increase is both sensitive and significant.

    I use the medi 95 gloves--I like them a whole lot more than the standard medi gloves. Gloves are very tough to fit correctly.

    I think you had a whole lot of triggers in a short period of time: surgery, flying, lifting your son, and you swelled, and you caught it early and that is the best way to get things under control.

    Here is a link to qualified therapists:

    http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm

    You don't want to wear day garments when sleeping--they can form a tourniquet effect.

    There was a study by Nicole Stout PT, and she took all women post op and measured them, and if they had a 3% increase, she put them in a Jobst off the shelf sleeve and gauntlet for the next month, and most women did not progress. She had them wear it all day.

    Lousy fitting compression is a problem, but wear it a fair amount right now, and check how you're doing.

    Are you away from home right now?

    Kira

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