Beginning of Infection or LE (or both)?

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Shira
Shira Member Posts: 64
edited June 2014 in Lymphedema

So of course I get what looks like my first noticeable swelling on a Friday at 4pm!  What I am wondering is, how do you know if swelling (with redness that went away quickly) is the start of an infection or the start of LE? 

I had 16 lymph nodes taken out in October (2nd surgery as they missed the Sentinel Nodes the first time).  After surgery I saw a PT who specialized in LE due to tingling and weird feelings in my hand and arm, but it was never clear if it was LE or just from the surgery, and the visits ended after a while.  Since then, my arm and hand have been getting better, and for the most part (some tightness on and off) seemed back to normal.

Then for the last few days I noticed sleeping on my surgery side (which is my sleeping side) seemed to be causing a little tingling. Then a few hours ago, my wrist became a little puffy and had red lines.  The red lines went away quickly (they almost looked like I was carrying a bag there, which I might have been), but my wrist (and the back of my hand I think) is still a little puffy. Also, I do have a small possible bug bite on that arm, but it's not red or anything and I think I've had it for at least a few days.

So I read that if it's LE, you should do manual lymph drainage, which I know how to do from PT, but if it's the start of an infection, you shouldn't. I did talk to my doctor, who said if it gets red or puffier I should go to the emergency room, and the PT's won't be reachable until Monday. 

So not sure what to do.  Do I need to go to the hospital if it's just puffy and not red?  If so, could it wait about 12 hours so I can go to urgent care in the morning and not the emergency room on a Friday night?  Should I do the drainage? Wear a glove (I have one that goes from tips of fingers and over my wrist)?  Is there an easy way to rule out infection at this stage?    

Thank you for any insights or advice!

Shira

 

 

 

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  • Binney4
    Binney4 Member Posts: 8,609
    edited June 2014

    Shira, bummer! There's no way I know of to rule out cellulitis, unfortunately. Waiting 12 hours might be a possibility, but don't hold on to it as a goal if this progresses. Here's what to look for:
    http://www.stepup-speakout.org/Emergencies_and_Med...

    The sudden onset of the swelling is worrisome. If it were me I'd [probably panic first and then, once I forced myself to calm down] skip the MLD and compression for now. Elevate your arm instead (and on a pillow when you go to bed), stay well hydrated, and do some deep abdominal breathing from time to time. DON'T sleep on that side tonight. Maybe stuff a couple of pillows on either side of you to keep from turning over in your sleep. Set your alarm a couple of times tonight to wake up and check yourself for symptoms.

    If you end up heading to the ER--or to critical care tomorrow for that matter--be prepared to chant, "breast cancer, lymphedema, cellulitis" to just about everyone you encounter, just in case they don't think of it themselves. (Hmmm, was that snarky? Nah, it just doesn't occur to a lot of people, so it's smart to help them out…)

    I'm really sorry, Shira. It's so discouraging to be faced with swelling. Hang in there, keep us posted, and tell us how we can help.

    Gentle hugs,
    Binney

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  • Shira
    Shira Member Posts: 64
    edited June 2014

    Thank you Binney, much appreciated! So far it's holding steady, no red, and I'm waiting it out with with my fingers (lightly) crossed.

    I can sleep on a big ottoman tonight. It's probably the only way I'll be able to avoid sleeping on my surgery side. And I'll set my alarm, although if I'm sleeping in a chair I'll probably wake up a few times anyway :-(

    I'm actually not 100% sure the swelling was sudden. It could be that I just noticed it when I did because of the (temporary) redness. However, point taken as either way I still don't know what's going on with it!

    I will be sure to mention LE etc. when I do get to the docs, and I'll read the info on the link you sent.

    Thank you again.

    Shira

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  • Binney4
    Binney4 Member Posts: 8,609
    edited June 2014

    Shira, thinking about you--hoping all's well with you! Be well,
    Binney

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  • Shira
    Shira Member Posts: 64
    edited June 2014

    Hi Binney,

    Thank you for checking in.  I ended up going to Urgent Care Saturday morning, and they didn't see any signs of infection, but agreed with me that my wrist (and thumb area) looked bit puffy (edema/lymphedema).  So today I called the LE PT I had seen after my surgery, and luckily I got her last open slot this week and will see her on Wednesday. 

    I've been doing the pillow thing as you suggested and staying off that side at night.  I've been able to sleep this way better than I thought, and so far my arm has stayed the same. 

    I also have a feeling that there may be puffiness/LE in other areas besides my hand.  My bra had been tight for a few days, which I thought was PMS, but PMS is gone, and my bra is still tight (and I haven't gained weight).  I'm also thinking heat could be a contributing factor for me.  My surgery was in October, and I live in Mass, and this week was the first real heat I've dealt with since surgery.

    I've been reading more of the posts in the LE section, and I believe you mentioned you have a left-handed keyboard?  If so, do you have details?  I had tried to find one you had mentioned (I believe) back in the fall and was confused.

    Thank you so much by the way!  I actually first learned about LE from this site, and not from my (first) surgeon. 

    Shira

     

     


     

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  • Binney4
    Binney4 Member Posts: 8,609
    edited June 2014

    Shira, really glad to hear from you, and amazed that you got such a quick appointment! Let us know how it goes on Wednesday. Thinking of you!
    Binney

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