Arm pain after mastectomy and lymph removal

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heidirgorecki
heidirgorecki Member Posts: 15
edited August 2019 in Surgery - Before, During, and After

I just had a bilateral mastectomy a week ago with sentinel nodes (15 of them) removed. Saw surgeons and everything looks good, although drains (have expanders for reconstruction) couldn’t be removed yet.

I’m wondering if anyone has any semi long term experience with the arm pain associated with the lymph node removal? I have the numbness on the back of the left arm and a frustrating pinching all the time now that the plastic surgeon said is from the lymph nodes being removed. I asked him if it was temporary or permanent and he said it can be either from what he’s seen.

What is really typical? Does anyone know? I will be seeing an OT regularly to avoid lymphodema but not for another month from now.

TIA!

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  • Tmh0921
    Tmh0921 Member Posts: 714
    edited August 2019

    I had my axillary nodes removed in 1999 at my first diagnosis. The skin on the back of my arm, some of my back and shoulder skin near my armpit, and my armpit were numb for a while after surgery due to nerves being severed. Over time, some of those nerves regenerated and I regained a lot of sensation, but I still have some numbness in my skin. The surgeon said this is normal, they can't avoid severing some of the smaller nerves. I had pain while working to regain range of motion in my arm, but no pain since. I believe that should be temporary.

    I also have never, to this day, had lymphedema.


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  • heidirgorecki
    heidirgorecki Member Posts: 15
    edited August 2019

    @TMH0921 - that’s so good to know. I feel like they try to scare you with lymphodema instructions and it’s hard to tell how common it really is or not.

    I feel ok about the numbness - I have neuropathy from this chemo and another round 5 years ago with colon cancer but it’s the pain that is most frustrating and I’m hoping doesn’t stick around. It feels like someone keeps pinching the back of my arm to the point that it’s distracting...

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  • alto
    alto Member Posts: 233
    edited August 2019

    heidirgorecki, I had fewer lymph nodes removed, but I remember days 7-14 being pretty uncomfortable for my underarm, lower chest, side, and back but it got better after that. I'd say give it a week. The feelings you are experiencing now may not stick around. The first few weeks for me were new sensations and symptoms all the time, but by week 3 or 4, I started feeling like it was stabilizing and improving. I hope you get some relief soon.

    Did they give you gabapentin/neurontin? They sent me home with it, for nerve pain, and I took it for the first 2 weeks. It definitely helped with the sandpaper feeling.

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