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Irony
Irony Member Posts: 46
edited October 2016 in Lymphedema

Hi All! I had BMX on Sept 19 for left sided IDC. I am thrilled to say that, they removed it all and I will not need chemo or radiation. I may need tamoxofen. I will find out on Friday. This is such wonderful news and I am so happy, and I don't want to come off as ungrateful, but my left arm is a problem.

Two days after surgery the arm started to swell. I should also mention they could not find a sentinel node. They removed some axillary tissue but also no nodes found. I called re. the swelling and was told it was post surgical swelling and too early for lymphedema.

I saw my plastic surgeon. She also thought it was post surgical swelling.

Now, two weeks later it feels like everyone has changed there tune to now it is definitely lymphedema. The BS says I should start going for massage. The PS says I should wait two more weeks before any treatment.

My arm is swollen and tight and I've read so many conflicting things to do. I don't want it to get worse but I feel like it is getting bigger.

Suggestions?


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  • RobinLK
    RobinLK Member Posts: 840
    edited October 2016

    Find a certified lymphedema therapist who is also able to work on range of motion issues. Mine was able to address range of motion, cording and lymphedema. They should give you exercises for the range of motion and lymphedema. Massage for the cording and measurements for compression garments. Then teach you self massage. It will take some time, and therapists are pretty booked as there are not as many. Sorry you are dealing with this. I will try to find the link for a LE therapist search. I know it is somewhere on this site, most likely nearby!

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  • RobinLK
    RobinLK Member Posts: 840
    edited October 2016

    Link for LE therapist search

    ^^^Found it!^^

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  • Irony
    Irony Member Posts: 46
    edited October 2016

    Thanks Robink. Turns out it is not lymphedema but a blood clot that extends from my lower arm to my neck.

    I'm in the hospital on bloodthinners.

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  • RobinLK
    RobinLK Member Posts: 840
    edited October 2016

    Wow..so very sorry. Glad you are being closely monitored.

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  • Beatmon
    Beatmon Member Posts: 1,562
    edited October 2016

    Irony, so very sorry that this happened. And sorry that it took two weeks for a correct diagnosis. Hope the pain is now manageable. Brenda

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  • Irony
    Irony Member Posts: 46
    edited October 2016

    Thanks Beatmon and Robin. This has been quite a trip so far. Because it took two weeks to diagnose, I have extensive clot from my jugular vein in my neck to my elbow. Everyone is just super happy that my lungs,are clear. I will be in the hospital while the adjust my blood levels. Hopefully only a couple of days.

    I just want to go home.

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