I Had The SPY Test Done Last Week...

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Dejaboo
Dejaboo Member Posts: 2,916
edited June 2016 in Lymphedema

I got great news

those of you that know me...know that I have always said that I have a lot of pain but not much swelling....

Last week I saw Dr Chen in Iowa & had the SPY test done. Turns out I do not have arm lymphedema! The SPY was only done on my arms...Not my trunk. But Dr Chen does not believe I have truncal LE either. (I hope he is right) So that is really great news! Happy

But I still have constant pain :( I also have pain from my SGAP donor site.

He said I have PMPS & Nerve damage (from BLM & SGAP) While he felt PMPS is easily treated...From reading in the past & all last week- I know that is not true.

But I am working on trying to figure out something that will help.

The SPY test was not too bad. The numbing spray was almost more painful then the injections. They were all very nice there too.

I feel strange & like a fraud or something...saying I had lymphedema for 4+ years. I was going by what my therapist said. Though I never thought she was good. SillyHeart

And my compression sleeve really did help my pain. Now I have not had it on for 6 days. The 1st 3 days my arm hurt a lot. The last few days my arm is feeling ok.

I have had friends & family tell me - well how great now you dont have to worry about sunburn & blood sticks & all of that :o 'Well , yes I still need to protect my arm, I am still at risk for getting LE'

No one even asked about my pain I have been in for 8+ years & what that means :( kind of made me sad (in their eyes I am all cured)Sad

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  • Binney4
    Binney4 Member Posts: 8,609
    edited June 2016

    Aw, Dejaboo, our friends are in such a hurry to be past the fear and dread of a bc diagnosis that they don't even see the lingering (even chronic) side effects we deal with. And if it were just our well-meaning friends who acted like that maybe we could cope. But when our doctors dismiss these issues it feels more like a fist to the gut. I am so sorry that you've been left to deal with the pain alone. Any ideas about how you'll proceed from here?

    Big, gentle hugs,
    Binney

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  • SusanSnowFlake
    SusanSnowFlake Member Posts: 165
    edited June 2016

    I tried googling SPY test and got nothing. What is a SPY test? And very COOL about the LE maybe the right diagnosis will give you the relief you need.

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  • lbrewer
    lbrewer Member Posts: 766
    edited June 2016

    http://www.lymph.org/new-page/


    I go on spy test

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  • glennie19
    glennie19 Member Posts: 6,398
    edited June 2016

    YAY for not having LE,, but really sucks about having pain. Hope you can get some help for it. Keep us posted.

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  • Sannoliver1
    Sannoliver1 Member Posts: 25
    edited June 2016

    Dejaboo thats great news! I'm very interested in what's next for you as I feel I'm in a similar situation. Have you heard about false negatives on the spy test? I had one with Dr. Massey and she said it looked normal. I usually feel okay in the morning, but have a dull ache as the day progresses or burning pain in my armpit and inner elbow. If it was nerve pain, would it get worse with activity? Or be pretty constant? My swelling is pretty minimal, but all the other sign point to LE.

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  • dtad
    dtad Member Posts: 2,323
    edited June 2016

    Dejaboo....just saw a lymphedema specialist who said she's not sure if I have it and wants to do the SPY test. I'm trying to decide if I should. I have some asymmetry in my right hand but no real edema.I have had to cuts that needed to be treated with antibiotics. I forgot to ask her a question. I was wondering if the test can determine if I will be prone to lymphedema. Another words just it just tell if I have it now? Could I get it in 6 months or a year and need the test again? Thanks for sharing....

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  • SusanSnowFlake
    SusanSnowFlake Member Posts: 165
    edited June 2016

    @lbrewer thanks for the link.

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