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Shoulder Pain - scapular winging after SLN biopsy

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Mockingbird114
Mockingbird114 Member Posts: 17

I had a sentinel lymph node biopsy on December 2 and everything went very well, no spread, and the incision has healed nicely. Initial swelling under my armpit and that is going down as well. However, the past week I've developed extreme pain in my right shoulder blade and arm, same side. It is almost unbearable, hard to sit, do any tasks, or sleep. I've had an assessment, and they tell me it is scapular winging...which I have never heard of before. My breast surgeon said to try physical therapy for the next few weeks to see if it improves, and if not, she'll set me up with a neurologist. Has anyone here had this experience? Did PT work or did you have to have treatment or surgery to fix?

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  • minustwo
    minustwo Member Posts: 13,184
    edited January 2022
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    Mockingbird - I had to look it up. Therapy sounds like it's normal, but I would definitely want to see an orthopedic shoulder specialist, or maybe a neurologist up front since it's a nerve issue. Surgeon's cut - that's their expertise and that's what they do.

    '...majority of patients will spontaneously resolve with full return of shoulder function and resolution of winging by 2 years...'

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC26841...

  • serendipity09
    serendipity09 Member Posts: 769
    edited January 2022
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    Mockingbird - I was diagnosed with the same thing. Been in PT since last January. I see an ortho and neurologist. Things were getting better until I did radiation and now I'm back to were I was a year ago, if not worse. I see the ortho this week and hoping that he can figure something out, or give me another cortisone shot because the pain is too much.

  • Mockingbird114
    Mockingbird114 Member Posts: 17
    edited January 2022
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    Serendipity,

    Thanks for sharing your story, I read it earlier and I see it is gone now. I have had very extreme pain the past few days and have been reading up on the subject. According to several sites, it is not quite as uncommon as previously noted, but under diagnosed. I start PT this week and hope that I will start improving sooner than later.

    Incidence, predictive factors, and prognosis for winged scapula in breast cancer patients after axillary dissection

  • Mockingbird114
    Mockingbird114 Member Posts: 17
    edited January 2022
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    MinusTwo,

    Thanks for sharing this link. It helped me start some research to understand what is going on. Apparently, nerve damage can occur during the lymph node surgery and can lead to this condition. It is very painful for me right now, hopefully PT will help.

  • FarAwayToo
    FarAwayToo Member Posts: 79
    edited January 2022
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    Mockinbirgd,

    I had neck and shoulder pain and one of the PTs I've worked with mentioned winging. I think mine was called "shoulder winging". You could actually see how one of my shoulders was more forward than the other. I hope this makes sense. I'm pretty sure mine was the result of reconstruction (under the muscle implants), but I can see how any disruption in that area can cause shoulder issues.

    PT helped a lot, but it took several months to resolve. This was 2 years ago, but I still get a hint of discomfort if I sit too long in a wrong position while working at my computer. I know what to do for it (the set of exercises given to me by my PT). Good luck, I hope you feel better soon: I know the pain can be quite bad - it woke me from sleep several times).

  • serendipity09
    serendipity09 Member Posts: 769
    edited January 2022
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    Mockingbird - I deleted the post as I was reading through my chart last night to prepare questions for today's appointment and realized that the Ortho mentions it in my notes and mentioned it to me in person, so in my mind I was diagnosed and that is not the case. My alignment is definitely and noticeably off. We'll see what he says today. I apologize for the confusion and it was not my intent to mislead.

    I hope PT makes you feel better.

  • Mockingbird114
    Mockingbird114 Member Posts: 17
    edited January 2022
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    Hi FarAwayToo,

    Yes, my right shoulder blade is sticking out from my back too. All I knew was that my back and arm were hurting, and getting worse, not better. The physical therapist had me do some movements and examined my back and she gave me the name of "scapular winging" or "winged scapula"

    Thanks for letting me know about your experience. It seems like it takes many months or even years to resolve for most people. Glad to know the PT helped you. My job is primarily working on the computer all day long so hoping to find ways to mitigate the hand/arm position with stretching.

  • Mockingbird114
    Mockingbird114 Member Posts: 17
    edited January 2022
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    Hey Serendipity, no worries...I understand! Hope you get some relief with your issues. Please let me know, if that is ok, how it goes. :)

    Thanks and good luck!


  • serendipity09
    serendipity09 Member Posts: 769
    edited January 2022
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    Mockingbird - thanks! Hope you are doing ok.

    Ortho's office called and cancelled due to covid. Rescheduled for next week. I mentioned scapular winging to my PT and she said that it very well could be. I'm struggling so much with my shoulder, neck and arm, I'm not progressing whatsoever. I'm tired of being in pain and restricted in movement. It's all so frustrating.


  • FarAwayToo
    FarAwayToo Member Posts: 79
    edited January 2022
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    Mockingbird and Serendipity,

    The PT will help, but these shoulder issues might take a long time to resolve. I suggest finding a good therapist and having at least 8 weeks of once a week sessions, perhaps more in the first 2-3 weeks. They should send you home with a set of exercises. I did mine religiously! I work from home so getting up to do them 3-4 times a days wasn't a problem.

    Also, they should suggest how you should sit at a computer, sleep (I was told to sleep on my unaffected side while hugging a pillow with my affected arm - this in itself helped A LOT and I could finally sleep ok), lift your arm etc. My PT also used manual therapy (joint mobilization and manipulation) in addition to assigning specific set of exercises.

    Other at home remedies that helped me were magnesium bath, warm neck wraps (I made one out of an old pillow case and rice - put it in a microwave for 2 minutes to warm it up) and Spoonk Accupressure Mat (look it up on Amazon). The latter may seem like a torture device at first, but when you are in pain and your muscles are spasming, it has a surprising ability to relax them. At the worst of my pain I was looking for anything that could help it even a little bit. I've taken ibuprofen occasionally, but didn't want to take too much.

  • Mockingbird114
    Mockingbird114 Member Posts: 17
    edited January 2022
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    Hi FarAway,

    Your information came right at the best time for me! I had my first actual physical therapy session, and I was able to ask about all this. She demonstrated exercises with me, had me do them for her, then printed out with instructions and illustrations so I can do at home 2 or 3 times per day. She gave me advice on how to sleep, positioning, pillows, and discussed ergonomics of how to use my computer as well.

    I will return again this week for more work, and because my shoulder and back are a little swollen, a lymphatic massage. She explained that my swelling is not likely lymphedema, but the massage will help with it too. They will tape my shoulder blade to hold it back, improving its structure temporarily, and this should help with sleeping until the acute irritation and inflammation can calm down. After a couple of weeks, I will start using bands and weights for more strengthening. A lot of my issues are probably damaged nerves tingling and zinging. She explained that nerves heal much more slowly than muscles.

    I am looking forward to magnesium baths, warm wraps (my surgeon said to use ice packs), but I'd like to know more about that Spoonk Mat...it does look like a torture device! Does it work? With this much pain, and lack of sleep, I am willing to try anything!

  • FarAwayToo
    FarAwayToo Member Posts: 79
    edited January 2022
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    Mockinbird,

    Glad you were able to get to a PT, I think they are all just angels. If yours also does lymphatic massage, great! I had two separate therapists - one for lymphatic massage (no LE for me either, just a bit of a discomfort in the arm - the opposite side to where I had shoulder/neck issues, surprisingly), and another for manual therapy/exercises/positioning advice.

    I think ice packs work for some people too, but I was taught about every injury - ice for the first 24 hrs, heat after, so I think heating helped me more. Also, I had muscle spasms, and just couldn't imagine making those muscles colder.

    Spoonk mat works! It is painful at first, but eventually it helps you relax. I've fallen asleep on mine :).

    I suggest starting on a soft surface (like on your bed) and wearing a t-shirt, then slowly progressing to bare skin and then to setting it up on a hard surface (floor). The more give your bed has the easier it is because the needles don't stick into your skin as much. If the bed is too soft (not enough pressure) and the floor is too hard, set it up on a yoga mat to have just a little bit of cushion. Put the yoga mat on a floor, then put the Spoonk, then put yourself :)

    You can also wrap it around your shoulder/neck area and just press with the fingers of the opposite hand to do some self-massage.

    I also done cupping on that shoulder/neck junction, but it didn't help me. As you can see, I was also up for anything, it was so painful. I hope yours will get better soon!

  • serendipity09
    serendipity09 Member Posts: 769
    edited January 2022
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    FarAwayToo - thanks! I've been in PT for exactly a year today, with a few breaks when things were good, prior to rads. She does the lymphatic massages on me, no lymphedema thus far for me. My therapist is indeed an angel! I also have massages done once a week at the cancer clinic by a Onco nurse who's trained and licensed to work with cancer patients. Definitely going to look into the mat.

  • serendipity09
    serendipity09 Member Posts: 769
    edited January 2022
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    FarAwayToo - There were so many good reviews on the mat, so I ordered it. Should arrive Saturday. Looking forward to trying it. Thanks again.

  • FarAwayToo
    FarAwayToo Member Posts: 79
    edited January 2022
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    Serendipity, I wish you pain free days!

  • serendipity09
    serendipity09 Member Posts: 769
    edited January 2022
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    Thank you FarAwayToo! Same to you! Ortho's office called me and ordered an MRI before I see him, thank goodness..

  • Mockingbird114
    Mockingbird114 Member Posts: 17
    edited January 2022
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    I've had 2 PT sessions and one lymphatic massage this week and exercising twice per day at home. I can already tell that this will help, so I am feeling more hopeful. The nerves are still irritated and painful, which I am told may take months to heal, but the shoulder and arm strengthening and stretching is making me much more comfortable. I am sleeping better, only waking up once in the middle of the night instead of tossing and turning.

    Serendipity - please keep me posted on your experience with the mat! I may give it a try. And let us know how the Ortho visit and MRI goes!

    FarAwayToo - thanks for all the great advice and encouragement...I really appreciate it!

  • SandraDublin
    SandraDublin Member Posts: 16
    edited January 2022
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    Just found this site and is already a life saver of info!

    I am nearly a week out of surgery for my mastectomy and ADLN and was struggling to complete my first week exercises. Noted my right shoulder blade is sticking out and even through still on pain killers can feel pain there.

    I have a check up tomorrow so will raise this and request PT sessions. Your answers gave me hope it can be resolved although does seem to take time and ideas to try so thank you! I am unfortunately just starting to discover the many side effects of treatments BC can and does cause :(

  • serendipity09
    serendipity09 Member Posts: 769
    edited January 2022
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    Mockingbird - Love the mat, it really is very relaxing. I have not been able to use it without a t-shirt though, I can barely handle it with my hands as it's very "prickly."

    My MRI came back showing capsular contracture in both shoulders AND a torn rotator cuff on the right that most likely occurred during my exchange surgery. I've read on this website about it happening, but never thought that was the case for me. I see the ortho on Thursday to decide how we will proceed, I hope he's going to do something as the pain in both shoulders is unbearable. My right arm and hand are numb most of the time. UGH!! I see my PS next week about my "foobs." Hoping they can just come together and do whatever it is that needs to be done jointly. Doubt it though.

  • FarAwayToo
    FarAwayToo Member Posts: 79
    edited January 2022
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    Serendipity, sorry about the rotator cuff :( My husband just recently discovered he has partially torn rotator cuff. He was offered surgery. From his doctor explanations and our brief research it seems that if the pain is not getting better with PT, surgery is the only way to get rid of it. He is seriously considering it, he is miserable, and has been in PT for going on 3 months.

    He tore it doing barbell clean and jerk at the gym. Just the fact that the same injury is possible from reconstruction surgery is telling how hard these procedures are on our bodies. Doing reconstruction is my only regret when it comes to my treatment decisions. I should've gone flat.

    Sandra, you are still very early in the process. I think everyone should see a PT after their mastectomy and work with one for as long as possible.

  • serendipity09
    serendipity09 Member Posts: 769
    edited January 2022
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    FarAwayToo - Sorry about your husband's rotator cuff. The pain is awful. Up until recently I was in PT since last January; had my exchange surgery in July and rads in Sept/Oct and it's been downhill since. I knew after my exchange, whatever was wrong with my shoulder was definitely different than ROM issues. It's crazy to think that something like that cn happen during surgery, but I guess if I really think about it , it's not that crazy as they are moving the arms every which way.

    Do you regret reconstruction because of the pain?

    Sandra - I agree with FarAway - PT does help, especially if you keep up with the daily stretching and exercises. I hope things get better for you.


  • FarAwayToo
    FarAwayToo Member Posts: 79
    edited January 2022
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    Serendipity, I know the pain must be pretty bad for you. So many muscles are involved in simple movement of the arm, and surgery and expander/implants messes it all up. Through in radiation and you have a perfect storm. I hope you find a solution.

    I don't know if it's surgery itself when the rotator cuff injury happens or afterwards, when our body relearns how muscles now interact with each other. Probably different for each of us. I don't think I have any tears, but I don't think I will ever be able to use my upper body the way I used to. Push ups, lifting things - anything to do with pectoralis muscle which is stretched and out of place due to how the under the muscle reconstruction works - seems to cause some minor problems. For example, my neck starts acting up and I start getting tension headaches. If I really keep on top of things with posture, exercises and trying to prevent even a slightest misalignment, I'm good, so I can't really complain, seeing what others are going through.

    My implants kept flipping for several years. My PS told me I didn't need to wear a bra. It took me 3 years to figure out that I do need to sleep with a sports bra on, otherwise, my implant(s) flip and then I'm in pain. They eventually flip back, but the movement causes pain and discomfort. When I asked PS if she could do anything like tighten the pocket, she said "no", but offered to replace with silicone implant (I have saline), saying they will be lighter and not as likely to flip. And then she added "but nothing will be 100%, implant flipping is a lot more common than people realize". Also, somehow quite a few stitches that were supposed to dissolve never did, and they freak me out, because they feel just like recurrence would. I had a lot of imaging and I think I know where all of them are now, but when my implants move, things shift a little and nothing feels the same, so I worry.

    I'm not saying nobody should do reconstruction. I think the risks are not discussed enough, and often times the option to not reconstruct is not discussed at all. I think reconstruction was a wrong choice for me.

  • serendipity09
    serendipity09 Member Posts: 769
    edited January 2022
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    FarAwayToo - I can't imagine what the flipping must feel like. My implants (silicone) are so heavy and hard. The radiated side is a bit softer than the the non radiated side, but they are, nonetheless, very uncomfortable and, too big. When I lay on back they go off to the side and when I lay on my side they're uncomfortable. I use a breast pillow, but because they are so heavy the pillow doesn't serve it's purpose, which is separation. Reduction is part of next weeks conversation with the PS. I'm sure that's going to be a whole other issue due to rads.

    For me, reconstruction was non-negotiable. Had I been married, I think I may have considered going flat, but the reality is, in my mind, it would be more difficult to find a man who could see past me not having breasts and I'm sure that others will say it's his loss. I know that there are many men out there who wouldn't care, but I honestly don't know any of them (sorry to those who are reading this and disagree, again, it's just what I think and don't mean to offend anyone.)

    I agree with you that the risks, possible SE's and other physical problems are not discussed when considering reconstruction. Like you, I don't think I'll ever be able to do a push up again, or lift weights like before. Hell, I don't think I'll ever be able to reach for something with my arm straightened out completely.

    I've spoken to many women who have had no issues and I thought the same would be for me, HA!

  • tinkerbell65
    tinkerbell65 Member Posts: 48
    edited January 2022
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    Scapular winging, huh? I had sentinel node biopsy with a lumpectomy in August. Over the last month or so (maybe longer, and I dismissed it) I've had tingling, numbness, and a "heavy" feeling in my arm. It's not constant, but I have at least one episode each day. The plastic surgeon said it could be related to the biopsy, because of a nerve bundle? It's not debilitating, but after reading this thread, I think another visit to my surgeon is in order.

    Thanks for the info. I hope everyone with issues gets the answers they need.

  • Mockingbird114
    Mockingbird114 Member Posts: 17
    edited January 2022
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    Hi SandraDublin,

    Sorry you are having these issues after your surgery! I had so much pain that I would have paid for physical therapy or anything out of my pocket if it would've help. My quality of life took a serious hit for several weeks with not only excruciating pain but lack of sleep too. I was told to use ice, and take ibuprofen to manage the pain, but found it almost useless. I learned that nerve pain is not helped much by the typical over the counter pain meds. Before surgery, I was told that there would be a possibility of nerve damage…2% or 5% I think, but that low of a risk, you don't think it will happen to you. There are so many important nerves that cross through the armpit area that can be irritated or stretched during surgery.

    On a good note, after 4 weeks of PT, and practicing stretches and exercises for scapula winging, I am finally feeling a great deal of improvement! The first 3 weeks were stretching only. Now she added strengthening to the routine and told me not to work through the pain. I still have discomfort, and some pain, but I am 75% better! I have 1 more session left and think I can keep it up on my own. I was given print outs with pictures to follow, stretchy bands, and instructions on how to "tape" my back when I need it. I feel like the taping pulled the shoulder blade back in place a bit and helped for sleeping. I was sleeping on my back with pillow propping me up to take the pressure off the back, but it was basically miserable, now I can finally sleep on my good side!

    I hope you can get some physical therapy lined up because I believe that can be a great tool in giving you some relief!

  • minustwo
    minustwo Member Posts: 13,184
    edited January 2022
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    Serendipity - I understand completely. I don't know any men who would understand no boobs unless you are already in a committed relationship. I agree - there probably are some, I just have never known any.

  • Mockingbird114
    Mockingbird114 Member Posts: 17
    edited January 2022
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    Serendipity,

    Glad you are enjoying the mat. It looks pretty "scary", but I may take the plunge and give it a try. I've read the reviews and many people seem to find them helpful.

    So sorry to hear about your capsular contracture and torn rotator cuff, it sounds extremely painful. I hope your ortho and PS will work together to find a good solution!

  • serendipity09
    serendipity09 Member Posts: 769
    edited January 2022
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    Mockingbird - so happy PT is working for you!

    I was intimidated by the mat when it arrived and I first took it out of the box. I waited about two days before I tried it. Now I use it once a day, on the floor in the living the room and it feels really good. I bought the one that has the neck roll too. Def worth it.

    MinusTwo - I'm 48 and have the hopes of still finding someone. I had the same conversation with my 21yo son not too long ago, and he told me "ma, we don't care!" My response.."Yea right!" He's far and few and I'm proud that he's in that mindset, especially for his age. It's unfortunate though that most men, young/old, are not.


  • FarAwayToo
    FarAwayToo Member Posts: 79
    edited January 2022
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    Serendipity, I understand about the body image, I do! I am enjoying my foobs sometimes - all the things I can wear now without worrying about bra straps showing! When mine don't flip, they are actually ok. And I think I found a solution with a sports bra. It took me a while to find comfortable yet restrictive enough, but now that I did and I wear them to bed, the implants haven't flipped.

    About the mat - I was doing lots of housework and must've bent wrong, I had some lower back pain yesterday. Put it under the side that hurt before going to bed and fell asleep on it. Woke up in 30 minutes, took it out and slept the rest of the night just fine. Woke up with just a touch of soreness, and now it's gone. The mat is magic (and I promise I'm not a marketing person for the company that makes themHappy)


    Tinkerbell - tingling and heaviness could also be lymphedema. Numbness is not common with LE though. But my very very slight LE feels like heaviness. Get that checked. I see an LE specialist a few times a year and do self massage once in a while, and it's under control. Oh, and I wear a sleeve when I exercise.



  • minustwo
    minustwo Member Posts: 13,184
    edited January 2022
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    I wear a "Wear Ease" Sydney bra 24/7. I actually wear it for mild breast & truncal LE, but it's the only one I found that is pretty but functional. It has a deep "V" neck so I can wear most of my existing clothes.