tightness and pulling feeling under and down arm past elbow

suntrek
suntrek Member Posts: 8
edited June 2014 in Pain

About a week after a lumpectomy on the left breast with sentinel and auxillary lymph node removal, I started having a tight and pulling feeling with slight pain in the elbow. The surgeon said it was nothing to worry about and it should go away in a couple of months.  I found some info on the internet about the Intercostal brachial nerve being damaged during node removal. Has anyone had this experience?

Comments

  • cinnamonsmiles
    cinnamonsmiles Member Posts: 779
    edited May 2013

    I had the nerve damage and still suffer from pain from it over two years later.The nerve damage pain I have been reading about and have had has not included the tightness and pulling on the arm.Usually it is zaps, skin hypersenstivity,burning,numbness, prickling or tingling to name a few. I have heard of cording sounding like that. Then again, just because I haven't heard of it, doesn't mean it never happens like that.

    Try posting in the Lymphedema forum as well. There are some women there that really know their stuff. I don't think that is something a surgeon should ignore. Please don't start freaking out. Get some feedback on here and decide what you want to do next. Some surgeons ignore our complaints of side effects after surgery. Some are more on the ball. Hopefully some of the ladies that know more than I do about LE and cording will come along and help you out.

    Is it a pulling feeling or perhaps swelling?

  • NatsFan
    NatsFan Member Posts: 3,745
    edited May 2013

    It sounds like it could be cording - also known as axilliary web syndrome.  It is known as a risk factor for the later development of lymphedema, although many people get cording who never go on to develop LE.  The Step Up Speak Out website has a full page of info about cording: http://www.stepup-speakout.org/Cording_and_Axillary_Web_Syndrome.htm

    Unfortunately many surgeons are not well-versed about axilliary web and about lymphedema, so too often we're left on our own to figure out what's going on.  If you suspect it is cording, press your surgeon to get you a referral to a Certified Lymphedema Therapist for evaluation and treatment.  If it is cording, you may be at increased risk for lymphedema - a CLT can evaluate your risks and teach you techniques to minimize your risk. 

  • suntrek
    suntrek Member Posts: 8
    edited May 2013

    It feels like both, although no one else can feel the swelling. Thanks for the info on checking the lymphedema site. I found info. on early intervention using a compression and gauntlet for a month. I am going to present this to my doctor. If he isn't receptive or doesn't know about it, I will inquire elsewhere. Also mentioned manual lymph drainage by a massage therapist.

  • suntrek
    suntrek Member Posts: 8
    edited May 2013

    Thanks for the info. I find the people on this site so knowledgable. I have learned more in the last two days than from any doctor or internet info. I pray for all of you who have just found out about your diagnosis, have started treatment and are recovering from it all.

  • Jennie93
    Jennie93 Member Posts: 1,018
    edited May 2013

    That is exactly what I've had. Apparently the pain & tightness in the armpit is typical after lymph nodes are removed (something NO ONE warned me about ahead of time!). But I had pretty bad cording, which really didn't improve much over time. Finally saw a lymphedema specialist and she said it was lymphangitis, would never go away on its own, put me on antibiotics for 2 weeks and it helped a lot! The cording almost disappeared. Now unfortunately after 7 weeks of rads the pain & tightness seem to be getting worse instead of better, and I have pain around the scar too which I never had before. I don't know if rads can cause some irritation to the area or what, anyone heard of that? Showing up after it was over? Seems unlikely to me. I'm just so discouraged right now, it seems like just when I thought I might some day be pain free, back it comes, reminding me of my surgery every time I reach for something. Sigh.

  • NatsFan
    NatsFan Member Posts: 3,745
    edited May 2013

    Jennie - rads can definitely cause issues for cording and lymphedema.  I'd definitely make an appointment to go back to your LE therapist.  You may also want to post a thread in the LE section asking if anyone had had recurrent cording.  I believe one woman who posts there regularly had the same issue, but I don't remember what the resolution ended up being. 

  • suntrek
    suntrek Member Posts: 8
    edited May 2013

    I HAD A LUMPECTOMY WITH LYMPH NODE REMOVAL 5 WEEKS AGO. PAIN UNDER ARM AND CORDING STARTED ABOUT A WEEK AFTER SURGERY. DOCTOR NOT TOO CONCERNED, SAY IT SHOULD GO AWAY IN A COUPLE MONTHS. BEEN READING A LOT ABOUT LYMPHEDEMA AND THE PROBLEMS IT CAN CAUSE. HAVE CALLED MY INSURANCE AND THEY WILL PAY FOR A COMPRESSION SLEEVE AND GLOVE. NOT TAKING ANY CHANCES. WILL ASK DOCTOR FOR A PRESCRIPTION ON NEXT VISIT. (DIDN'T REALIZE I WAS IN CAPS TILL FINISHED TYPING.)

  • NatsFan
    NatsFan Member Posts: 3,745
    edited May 2013

    Sun - make sure that the sleeve and glove are fitted properly - your LE therapist can make sure of that.  Improperly fitted sleeves and gauntlets can be worse than no compression at all.  Your LE therapist can also teach you what to look for and teach you what to do to lower your risk of getting LE.  Unfortunately, most doctors and surgeons are woefully ignorant about LE and will try to minimize concerns that we raise with them.  They'll tell us we're at low risk, that the swelling or cording is nothing to worry about and will go away all by itself, and basically not to worry our pretty little heads about it.  You're smart to be pro-active and to push your doctor on this.  These doctors might be great surgeons, but they're lousy at recognizing and acknowledging LE. 

    Just like you, I had cording - my surgeons and medical team told me told not to worry and it would go away.  LE was never even mentioned to me.  As a result, I knew nothing about LE and risk prevention measures I should have taken.  The first time I ever heard of LE was when I was dx with it.  Cry

  • Alcie1
    Alcie1 Member Posts: 68
    edited June 2013

    Insurance usually also pays for a therapist to crush the cooked lymphatic cords.  You just have to get a prescription from your doctor.

    Lymphatic cording is more common than most doctors would have us believe.  When our surgical pain calms down we tend to just accept that we will have this pain.  I waited 2 years to insist on treatment.

  • Jennie93
    Jennie93 Member Posts: 1,018
    edited June 2013

    I think you are right, Alcie.  I honestly thought that this was just something I was going to have to learn to live with from now on.  But I was lucky enough to get a super, wonderful RO who sent me to a LE specialist and *insisted* on PT.  Now there is hope.

  • jg10
    jg10 Member Posts: 52
    edited June 2013

    Do you have numbness in the back of your upper arm or into your back at that same level? Do you find that the muscles on the affected side have less bulk and strength? nerve damage can cause those. Do narcotics help your pain? If not, Nerva damage might be playing a role. I'm not saying that lymphedema and cording are not part of the equation, just that nerves can be cut during sentinel lymph node biopsies-- one of mine was. Nerves can and very often regenerate, I'm saying that because I found very few reassuring stories. If nerve damage is involved you might have trouble with aggressive physical therapy, some of your muscles are simply unable to respond appropriately. If that is the case, then I suggest you slow down the physical therappy process to your personal comfort level. Listen to your body and good luck.

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