Paresthesia after mastectomy (pins/needles in hands etc.)

eot28

Hi there,

I had a double mastectomy without reconstruction on October 11. This was prophylactic so I had no lymph nodes removed. I woke up with swelling in hands and pins & needles feeling in hands. Since the surgery the hand numbness/swelling and pins & needles feeling has been persistent and over the past few days the feeling has spread up both arms, tops of my shoulders, neck and now in my lower face. It's not completely numb but feels like it feels when your foot falls asleep. I'm now almost 3 weeks out from surgery.

I have some cording in my left armpit and I start physical therapy this week for that. I'm wondering if anyone has experienced this? Online I read it's called paresthesia. I can't seem to find any reference online of it being this wide-spread (only see references to people having it in their armpit or upper arm after axillary dissection).

Thanks!

NancyHB

I had something similar happen after my UMX with immediate DIEP recon - numbness in my left arm and pins-and-needles in my left hand, particularly my thumb and first finger. My surgeon said it was from the position my arm had been in during the surgery (nerve compression) and would eventually get better. It got a little worse first so I tried yoga stretches and other arm/shoulder movements; not sure if they helped but after a few weeks it did get better (although after 4 months I do have minor lingering numbness in the front of my thumb).

Hope you get some relief soon

farmerlucy

I had something similar in down my arms. The PT did something called a nerve cleanse and it was much better.

SummerAngel

When I woke up from my BMX surgery I couldn't feel or move my left arm at all. Over the next 24 hours I regained feeling except in my thumb and forefinger. After another 24 hours or so I only had pins and needles sensations in my thumb and forefinger and along the top of my arm to the shoulder. Over time the pins and needles went away, I would guess it took about a month. My left arm is still prone to the feeling of falling asleep, though, mostly in my hand and typically after I've been holding my arm in a bent position for too long (like when driving).

eot28

Oh thanks so much for the information. It's good to know it at least lessened or went away in most cases.

Farmerlucy- do you remember how they did the nerve cleanse? Was it like massage or stretching or something like that?

I'm starting PT tomorrow so I'm hoping they can help with it.

Thank you all

ksusan

I had some numbness and pins and needles in my arms and hands for months after BMX. Lymphedema was ruled out, but manual drainage plus fist pumping plus making sure that I moved around at night (at first I was quite restricted in sleep positions) pretty much eliminated it.

eot28

Thanks so much ksusan. Good to know that manual drainage and fist pumping helped. I have cording in one arm even though I had no lymph nodes out so I do wonder if manual drainage might help. I'm also restricted in my sleep positions so that's good to know that moving around at night also helped. I'm wondering also if it could be scar tissue compressing the nerves more (since it's getting worse in these 3 weeks post-surgery). It started with just my hands after surgery and now it's definitely been spreading.

I'm crossing my fingers that PT can help. I'll also look into manual lymph drainage. Ksusan, did you go to a lymphedema specialist to get the drainage or were you able to learn how to do it yourself?

Thanks again!

ksusan

I went to a PT with a lymphedema certification.

ravzari

I had that when I woke up and on and off for a couple of weeks afterward; mine was prophylactic as well and I just assumed it was because of the position my arms had to be in for the 4.5 hour surgery (splayed out to my side and held immobile).

Then again, if I sleep with my arms stretched up above my head or out straight at my sides, or if I keep them bent too long (awake or asleep, and it was like that pre-surgery too) they'd get pins-and-needles feelings as well so I didn't think to much of it.

The frequent feeling of it went away after a couple of weeks on its own, and now it only happens if I keep my arms in an uncomfortable position for too long (i.e. if I sleep funny).

farmerlucy

Re: nerve cleanse - it's been a few years (yay!) but it seems like she applied gentle pressure along a certain area of my arms in a line going down my arm. I hope you get relief soon. I thinkall mx ladies should get PT.

eot28

Oh great- thank you so much ladies! It makes me feel better to know it improved for you all.

I have PT later today so I'm looking forward to that.

Thanks again!!

eot28

ksusan, I'm curious if you had any hand or arm swelling when you had the pins & needles feeling in hands and arms? My PT said I'm most likely getting the pins & needles from swelling. She doesn't think it's lymphedema (she's a certified lymphedema therapist) but she thinks is still post-operative swelling (since i'm 3.5 weeks out from surgery).

Just curious if you had swelling as well or just the pins & needles/numbness feeling (if you remember).

Thanks so much!

Jennj99738

I had BMX on 10/12 with bilateral sentinel node dissection (2 each) and tissue expander placement. The pain is still there all over especially after I had my first fill on Monday but what is really upsetting to me is this terrible pain in my elbow when I extend my arms. It's much worse on the left (no cancer was found on the left). I am assuming it's nerve pain. It feels like something is pressing on a nerve when I unbend my arms, especially if I lift my arm. My PS said this can be normal. I am beginning to wonder if this will ever go away. I am going to see a lymphedema therapist but have no idea if this is the same as a physical therapist? Is there anything else anyone can recommend to help?

I feel like I'm going to have pain forever. I still haven't gone back to work and am supposed to go back no later than Monday, 11/28.

ksusan

eot28, no noticeable swelling in my hands. During that period I had what was characterized as mild post-surgical swelling on one side. This persisted through radiation but has subsided. It apparently didn't warrant an LE diagnosis.

eot28

Jennj99738 - I'm sorry you're dealing with such pain. I had my BMX on Oct. 11 and I also have some nerve pain in both elbows. Sometimes it's dull pain and I can't figure out exactly what's causing it. I am going to PT twice a week and I have cording in my left arm which might explain the elbow pain, but it doesn't explain the right elbow pain. I also have a lot of swelling though (sometimes down my arms and in hands) which could also be pressing on nerves.

I didn't have expanders put in (no recon yet) so I can't speak to whether the expanders could be causing the pain but hopefully someone else with experience will chime in. I hope things get better for you! This is definitely difficult stuff to deal with.

eot28

ksusan - thanks so much. Really glad to hear your swelling subsided after radiation. I'm in PT now and hoping it starts to help - they taught me MLD so I'm doing that twice a day and it seems to help so far. Just really hoping it's not permanent - the PT and surgical nurse are still calling it 'Post Surgical Swelling' at this point. Fingers crossed.

eot28

Jennj99738 - also it's good that you're going to a lymphedema therapist. I started with a PT that is also a certified lymphedema therapist. I think people can be a lymphedema therapist and also be either an occupational therapist, PT or massage therapist. The lymphedema therapist should be a good start though to look into that elbow nerve pain.

Marcia_Taylor

In May 2016, I had six weeks of radiation on my right breast followed by double mastectomy in August 2016. I have fully recuperated from surgery and have finished Lymphedema therapy. I, too, am experiencing a sensation (on my right back shoulder area) as if something is crawling under my skin - only on the right side which is where I had the radiation. I read that it is called parsthesia and that 25% of radiation patients report this condition.