Lymphedema Questions

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Bookworm14
Bookworm14 Member Posts: 176
edited April 2019 in Lymphedema

I had bmx in October and 16 nodes removed. Started with small swelling around upper area over elbow. I went to the lymphedema therapists on Wednesday where I was officially diagnosed with lymphedema. She only put this sports tape on the inside of my arm, back of the arm, and my back. I started turning red late Friday and started seeing a bumpy rash so I took off the tape since the office was closed. I have an allergy to latex and tape so I assumed the red and hot skin was from that. Woke up this morning to the arm being sore, red and hot skin still here, and a knot forming on the upper arm into the arm pit. This afternoon my hand is swelling along with the other stuff. At this point I do not know who to call. Is this a serious issue? My husband thinks I should go to the ER, but I do not want to panick or pay that stupid copay over something They can not help with. I am just really kind of mad considering none of this was happening until she put that stupid tape on me. any help or info you all can provide would be great

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  • Binney4
    Binney4 Member Posts: 8,609
    edited March 2019

    Bookworm, your husband is absolutely right on this one. The symptoms you list might very well be cellulitis, which is a genuine emergency. Here's more information:

    http://www.stepup-speakout.org/Emergencies_and_Med...

    But don't stop and read that now--read it on your way to the ER, and when you get there be sure to mention "lymphedema" and "cellulitis" to everyone involved in your care in case they don't recognize it quickly.

    Hugs, and please let us know how you are as soon as you're able,
    Binney

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  • Bookworm14
    Bookworm14 Member Posts: 176
    edited March 2019

    Binney4

    I put in a call to my oncologist just to make sure I was not having a reaction to my new Taxol. Waiting on him, but I did read that link you sent over. Keeping my fingers crossed that is not what is going on.

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  • santabarbarian
    santabarbarian Member Posts: 3,085
    edited March 2019

    I think you should go to ER; your onc may not get this for hours. Tell them about Taxol too.

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  • Bookworm14
    Bookworm14 Member Posts: 176
    edited March 2019

    thanks for everyone that posted. In the ER now. They think it is an infection, but they did an ultrasound as well to make sure it is nota blood clot. My Onco sent me straight over because he was worried about cellulitis as well. Keeping fingers crossed that I get to go home tonight.

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  • Bookworm14
    Bookworm14 Member Posts: 176
    edited March 2019

    JO-5,


    No temp, but I do have a slight headache. They said all the blood work is fine. Still red and hot so that has not gone down. Still waiting on test.

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  • Binney4
    Binney4 Member Posts: 8,609
    edited March 2019

    Bookworm, thinking of you! Hope you've got some answers and are on your way to healing.

    Gentle hugs,
    Binney

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  • Bookworm14
    Bookworm14 Member Posts: 176
    edited March 2019

    Binney 4,

    It was cellulitis for sure. They almost put me in the hospital, but luckily they just gave me oral antibiotics. Less red and painful today....although my hand and finger swelling is not going down as quickly. I’ve never had an infection like that... and hope never to again!!Thanks for checking in!!

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  • Bookworm14
    Bookworm14 Member Posts: 176
    edited March 2019

    JO-5,

    I had thoughts that it was from the tape, but the Onco and therapists said no. However, I did have a splinter stuck in my finger around that time so who knows. I am telling her to not put that on me any longer just to be safe. Everything seems to be getting better, but if he hand still has issues. I will def take your advice on elevating the arm. That really sucks that you did not have any issues until you had cellulitis. This breast cancer stuff just keeps on giving doesn’t it? 😟

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  • Binney4
    Binney4 Member Posts: 8,609
    edited March 2019

    Bookworm, thanks for checking back in. Good to hear you're on the mend. If further symptoms develop, though, do get help promptly. Whew!

    The protocol for using kinesio tape for LE is to test a sample first on an area of the skin not affected by (or at risk for) LE, just to make sure there's no skin reaction. The reason for that is because a skin reaction to the tape can lead to cellulitis. Any compromise to the skin is a risk when LE is present. Like you, I have an allergy to adhesive on some areas of my body, so taping is not an option for me.

    Kinesio tape is not generally considered a primary LE treatment. You'd want to start with Manual Lymph Drainage and wrapping to bring down any swelling. Compression garments and/or taping would then follow as a way to maintain the reduction. You might want to talk with your therapist about her treatment plan going forward, and if you aren't happy with it, consider a second opinion.

    Stay well! And hugs,
    Binney

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  • Bookworm14
    Bookworm14 Member Posts: 176
    edited March 2019

    JO-5,

    I have been reading up on this and the first thing I found was to protect your hands and arms. Will definitely have to make that adjustment! I work in a warehouse some around metal, wood, and greasy stuff so this is a big problem unless I wear gloves. So crazy that it is the little things we never used to worry about is what will put your butt in the ER or hospital! Hopefully, I can watch myself well enough to not have it again, but at least I will know what it is if it comes back!


    Binney4,

    I went to see her today and mentioned no more tape. She agreed, but was adamant that had nothing to do with it. Told her to move forward with the wrapping and massage, but to never put any type of tape or anything with glue on me. Yeah she never tested it, but had told me to tape it and then a wrap this week. Massages as needed and then compression garments. Hopefully, we can get it worked out and get a decent treatment plan going.


    Thanks for you both checking in. I hope you are both well!

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  • Bookworm14
    Bookworm14 Member Posts: 176
    edited March 2019

    So.....

    The oncologist cleared me to get wrapped since the arm looked great on Thursday. Got wrapped late Thursday. Today my hand swelled ever further starting at the knuckles up to midway on fingers. Nothing else swelled. This area was not as tight as the rest. So I guess the question is could the infection be spreading or coming g back or does the therapist just not know what they are doing? Or did we wrap it too soon?Took the wrap off and swelling is going down quite a bit.

    Just trying to figure out if any of you have dealt with this

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  • Bookworm14
    Bookworm14 Member Posts: 176
    edited March 2019

    JO-5

    Took the bandage off and went down, but I have noticed that if I use the arm too much today the hand wants to swell up again. Just sucks that until that tape was put on I had not had any problems. Only minor swelling right around my elbow.

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  • Bookworm14
    Bookworm14 Member Posts: 176
    edited April 2019

    okay I am beginning to think that this LE therapist may not know what she is doing. Hardly any swelling in my hand until she wraps me in compression bandages and now my fingers and hand stay swollen. She finally ordered me compression garments after seeing me for three weeks. Could not see her to try on the garments so brought hem home over the weekend and wore the sleeve and glove for 1.5 hours. My hand and fingers got so swollen that I had to take off the glove and the sleeve! The wrist area is so tight that you can see the skin bulge around it, the top of the sleeve leaves indentions in my skin for at least 1/2 hour after taking off the sleeve. I put the glove back on because my hand was so swollen that I could not even make a fist. Wore the glove for a couple of hours and then massaged the are. Swelling finally went down to what isnow my normal. Has anyone dealt with the sleeve causing the hand and finger Lymphedema to get worse? Did she just get me the wrong size...she said if I wore the garments that they could not be returned. Any help or information would be greatly appreciated. Forgot to mention that no one else in my city deals with lymphedema.



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