Neuropathy symptoms/needles in surgery arm?

Jane · 09-13-2010, 10:12 AM

Hi folks,

Two questions for this wonderful board:

1.)Has anyone had these symptoms in their surgery-side arm and been diagnosed?

I've been waking up the past two months in the middle of the night with terrible pain in my right hand/lower right arm. It feels like pins and needles with numbness and slight shooting pain. I need to sit up or stand up for a few minutes to "shake" the feeling out - but it is definitely MORE than a hand that has fallen asleep. This is the same side that I had my cancer on (mastectomy, 15 lymph nodes removed) in 2005.

2.) Have you had a needle stuck in your surgery-side arm without problems?

To get the above diagnosed, I have to get an EMG test, which will measure the electrical activity of the muscles in that arm. They use a thin, butterfly needle during the test. A neurologist (?) will perform the test and he said he's dealt with similar situations in the past - without problems. I just want to ensure that I don't get lymphodema from the needle puncture, small as it is.

Any input is most appreciated.

Thanks,
Jane

51 years old; mother of two wonderful, young teens (13 and 14)
2005 dx IIIA BC, prophylactic mastectomy on left; mastectomy on right, 6/15 positive nodes
Her2+++, 6 cm tumor
Usual round of chemo, radiation, one-year Herceptin

DiDi70 · 09-13-2010, 10:16 AM

Hello,

I am sorry to hear about the symptoms you've been experiencing. I haven't had any needles in my surgery arm, but there is a new protocol at my hospital allowing blood to be drawn from the affected side if necessary. I will ask what caused the shift in thinking when I go for radiation tomorrow and see if there's any supporting documentation for the change.

DiDi

BonnieR · 09-13-2010, 11:50 AM

Dear Jane, I had a bilateral mastectomy so BOTH my arms are surgery arms. One of them has a mild lymphedema so that is the one which we prohibit needle sticks. However I was recently hospitalized and while unconscious someone ran an IV in that arm! Fortunatly, no ill effects.
My other arm is used for BP, IV and lab work and has not had any problems. My veins are small so they often have to use a butterfly.
Keep the faith, I bet it will be fine.

Lauriesh · 09-13-2010, 04:16 PM

Hi Jane,

I also had the same problem in my hand. I would wake up in the middle of the night with horrible shooting pain/ numbness, etc. I went to Walgreens and bought a wrist brace. I would put it on in the middle of the night, when I would wake up with pain. It helped tremendously. At first, I would have it every night, and gradually it got better. I haven't had to use it now for a few years.

Laurie

DiDi70 · 09-13-2010, 05:20 PM

Hi Jane,

I just remembered my surgeon telling me that Carpal Tunnel Syndrome can be a consequence of mastectomy and lymph node dissection. Tingling and aching and shooting pains are often a symptom of Carpal Tunnel.

Just a thought.

DiDi

sassy · 09-13-2010, 06:34 PM

Hey Jane,

Your signature didn't indicate hormonal status. Were you ER/PR positive? Are you currently on an A/I?

michka · 09-14-2010, 12:51 AM

Hi Jane. About a month after surgery the upper inside of my arm started burning at times with small electric shocks and stabs . I also had numbness there which seems strange but in fact is not incompatible. It was difficult to live with that especially at night. I went to a specialized cancer pain center after trying standard pain killers. (at Institut Curie in Paris). They explained it was PMPS (post mastectomy pain syndrome) and gave me Neurontin to control the pain without being sure it would work for me. It did but at high doses in the beginning with all the fatigue side effects. But I managed after 2 years to cut down and get rid of the Neurontin progressively. Today I still have some burns, stabs but they are less important and I learned to live with it. I never thought I would be able to that.
They told me this kind of pain would not show up on a Electro Neuro Myogram. (EMG)
If the pain had been bilateral, they would have done it to diagnose a neuropathy. And I think it really has to be a severe neuropathy to show on an exam.
I hope you don't have PMPS. It has only been well described and recognized for a couple of years. But if you do, there are some medications than can help. And it can improve with time. But it may not be that because what surprises me is that you are dealing with this new pain so long after the mastectomy. It usually shows up in the months that follow.
I hope they will find a way to help you get rid of this pain.
There is a solution. Michka

Chelee · 09-14-2010, 01:35 AM

Jane,
I have been told by my onc and breast surgeon to never under any circumstances allow any needle sticks or blood pressure cluffs on my SNB arm. They were both adamant about it. But I heard of some women that have at one time or another let someone access their arm for labs, or BP and were fine. (Or as Bonnie mentioned...woke up after surgery to fine they used that arm.)

Your symptoms sound just like Carpal Tunnel Syndrome as Didi mentioned. My husband had it in both hands/arms and said the exact same things you said. Bed time was the worse for him...woke him up every night...couldn't get any sleep. He felt like he had no blood flow in either side. He went to the doctors and and he did have Carpal tunnel...had surgery for it yrs ago and has been great since then. He said the surgery was the best thing he every did.

See what the Neuo doc says after your EMG? I had an EMG of my right leg/hip yrs ago and that needle goes really deep. I just don't want you ending up with lymphedema. Maybe get a 2nd opinion from another surgeon about the risk from a EMG? Also make sure you pick a highly qualified Neuro. (You should be fine...glad to see your asking all the right questions ahead of time.) It could just be caused from having the SNB...all the nerves that are involved. Hope you get to the bottom of the problem soon. Hang in there.

Chelee

Jane · 09-14-2010, 06:21 AM

Dear HER2 friends,
Thank you so much for all of your insights and suggestions. They are extremely helpful.

And Sassy, yes, I am ER/PR positive and am on Arimadex.

When I called the EMG lab yesterday, the woman told me that I had the best neurologist in the lab, so that was comforting.

I will let you know how things turn out. My test is on Sept. 29.

Blessings to you all,
Jane

sassy · 09-14-2010, 04:25 PM

Jane,

I'm five years out also and have had similiar experiences from the beginning. I would wake in the morning to both hands being "asleep", numb, tingling, painful and just about useless. I would often run hot water over my hands and rub them to "bring them back to life". I would experience the same when my hands were inactive for a perod of time. I've always felt this was more a side effect from Arimidex than anything else. Just not sure why yours would show up now, and not before. I've been taking Lasix for the past several years which has helped tremendously with the stiffness associated with Arimidex. It seems not many people have done this, but there is a tread about a recent study supporting this usage.

Hope you find some relief. PM me if you have questions about Lasix.