Question on Tingling and Pain in Arm after ALND

ladyb1234

Question on Tingling and Pain in Arm after ALND

ladyb1234

I am experiencing pain - sharp, tingles and a lot of numbness on the back of my arm after my ALND surgery.  I have been told this is normal but want to know what are the signs of Lymphedema.  What should look for? Thanks in advance for all support, encouragement and help.  I have another follow-up with my surgeon on Friday  are there any specific questions I should ask? 

carol57

ladyb, I had just SNB, and the back of my arm is still numb three years later. I suspect that the pain and tingles are related to your surgery too, and I sure HOPE that those issues subside for you.

Here's a page from the stepup-speakout site that tells what to look for: 

http://stepup-speakout.org/What_%20is%20_Lymphedem...

Several researchers have done wonderful work to identify early, early LE symptoms that are quite accurate in signaling LE before any swelling is present. Here's an excerpt that explains that, from a course about LE, for nurses (BCRL= breast cancer-related lymphedema):

Diagnosing
BCRL: the value of patient-reported symptoms

Visible
BCRL is already advanced BCRL

A limb can contain 20%-30% added
fluid volume before there is visible swelling, meaning that relying on
measurements to detect BCRL, especially with the widely available but less
sensitive tape-measure method, is likely to miss very early BCRL.

Diagnosing BCRL when
pre-clinical—i.e. before visible swelling—means diagnosing the condition at its
most treatable, manageable stage. Early intervention has been shown to result
in very good treatment outcomes using simple, non-custom compression garments
(Stout Gergich et al, 2008). Technology exists that can detect pre-clinical
BCRL (bioimpedance and perometry), but it is expensive and not widely
available. However, several studies have shown that patients’ self-reported
symptoms are very accurate indicators of early lymphedema.

Studies that tested the accuracy
of self-reported symptoms as indicator of BCRL include:

• Armer (2003) studied the accuracy of using
  self-reported signs and symptoms to identify the presence of lymphedema. BCRL
  was predicted by three symptoms: ‘heaviness in past year,’ ‘swelling now,’ and
  ‘numbness in past year.’ The authors
  concluded that changes in sensations may be indicators of early lymphedema or
  other treatment-related sequelae that should be assessed at follow-up visits.
• Norman (2008) used survey questions to conduct a
  5-year study of 631 women with breast cancer diagnoses. The study identified
  5-year incidence of BCRL as well as the condition’s time-course and severity of
  symptoms experienced by the study population. Survey questions included asking
  whether jewelry or clothing were too tight, whether patients could not see the
  knuckles or veins in the hand, and whether they noted puffiness, indentations,
  pain, firm or leathery skin, tiredness, thickness, heaviness, swelling after
  exercise, or difficulty writing. Patients reported frequency, severity, and
  level of associated distress for each reported symptom.

Key
points

Patients’ self-reported symptoms are important
indicators that medical follow-up may be needed.

Questions to ask patients that might disclose
early BCRL are quite simple:

• Have you noticed any heaviness in your arm?
• Do you ever feel numbness in your arm or hand?
• Have you noticed that jewelry or clothing is too
  tight, without weight gain?
• Does one hand look younger than the other?

ladyb1234

Carol, thanks so much for the information and your support.  It was very valuable and what I was looking for. I have some swelling in the arm the ALND was performed on.  With this said, I still have my drain in and wasn't sure if LE shows up this soon  after surgery or if these are symptoms  from the surgery.  The article helped a lot.  Thanks again.

carol57

ladyb, let's hope that you're experiencing temporary post-surgical swelling.  For sure that's common, and if you still have your drain in, my guess is that's exactly what's going on.  Now you're armed with information about what to watch for in the months to come, to be able to catch any early symptoms of LE, when it's easiest to deal with and most responsive to treatment.  

Good luck--find out what might be done to help alleviate the pain--and take it easy with that arm. 

Carol

SpecialK

ladyb - I had ALND and do have lymphedema in that arm.  There were definite differences in the way the two things felt - my LE did not develop until months later so for me personally I can describe the difference to you, but keep in mind this is just me - you may experience something different.  After the ALND surgery I had the pins/needles, numbness and a feeling of irritation on the skin of the bicep and the skin of the area below the underarm - I didn't really want those two areas to touch each other - I found that clothing with a sleeve helped this.  On the back I was numb and had weird zings across the entire shoulder blade.  I was quite uncomfortable for a longer period than after BMX - my ALND surgery was separately done 5 weeks later as my positive nodes were not discovered until after the BMX while being checked in the lab.  When my LE symptoms started (due to a body-wide swelling incident during chemo) I had classic axillary web syndrome symptoms with pain coming from the underside of the elbow up and over the forearm and ending at the base of the thumb.  This was exacerbated by heat, somewhat alleviated by staying cool and elevating.  I did have visible swelling all the way down the length of the arm and the feeling of heaviness - all felt different from the feelings right after the ALND, which had dissipated probably by half at the time the LE symptoms started.  I would say that it took the better part of a year before the ALND symptoms were mostly gone.  Now I have no numbness at all, no tingling feeling and the only place with no feeling is the underarm itself and I only notice that when I shave.  My LE is decently controlled, but I do recommend seeing a LE certified therapist to check you out and at least help with exercises to do to help with your ALND symptoms.

vlnrph

Like Special K, my ALND did not lead to LE until a few months later. Post-op I remember thinking it felt like a tennis ball was in my arm pit! There was also a weird skin numbness along with deeper sensations since nerves were cut. Now I don't need antiperspirant on that side because I don't sweat...

Hope your appt with the surgeon went well and you continue to recover (carol57 always gives good advice)

ladyb1234

Thanks all for the information  My appointment went well and they were able to take the drain out.  I am glad they did not take it out as scheduled and kept in for more than a week. They have also setup a PT appointment for me on 8/18.  

SpecialK, the explanation of your experiences with ALND post surgical symptoms are pretty much what I am experiencing.  I wore longer sleeves  (had not since my ALND since it was so hoooot) and it did help with me not waiting the two parts of my body to even come in contact with each other :-).  The numbness is present in the back of my upper arm and on my back which I was surprised.  The BS Assistant  indicated I probably did not feel  this until later as it sometimes takes a while for the anesthesia and all the numbing medication to ware off and that area to "wake up".  

The information on each of your experiences and the  link from Carol57 is invaluable to know if I am feeling onset of LE and not the normal ALND issues.

carol57

SpecialK, the description you wrote is incredible, and I hope we'll all keep that post in mind when people ask the same question in the future. 

ladyb, it sounds like you got some reassurance!  I'm not happy you're having symptoms, but it's good to know that they're somewhat expected, and not likely LE.  Yippee!

aquarian23

SpecialK, you are the first person that I have come across that has had the numbness/tingling all the way down to your thumb.  I did not, however, have lymphedema, just the axillary web.  How long did it take for your numbness near the hand to go away?  I also have numbness on the back of the arm.  It is not a good sensation at all!  I have been seeing a physical therapist for the axillary web, but she really doesn't have any solutions for the numbness.  Thanks!