I could type up a huge story of my woes with incompetent and uninterested doctors, opioid addiction, chronic pain, insomnia, and mild disability, but I'm sure you guys know all too well what it's like.

I'm here today because, despite having seen over twenty doctors (that's right, twenty) over the last couple years regarding my finally-diagnosed TOS, I have always been met with confusion when I bring up the bizarre cracking of my left shoulder. It's not like a normal joint crack, one you might do intentionally to your knuckles. It occurs in multiple areas, including my scapula, SC joint, GH joint, and even my elbow. It is generally associated with repositioning my shoulder - the same action that triggers the typical TOS pain throughout my shoulder, back, neck, arm, and hand. Retracting my scapula, back towards my spine, seems to cause multiple cracks/pops. I can do it over and over again, i.e. it's not nitrogen releasing from a joint or something. It seems to be bones hitting or scraping against each other. Obviously, my left shoulder and arm are fairly asymmetrical when compared to the right side. The TOS symptoms and cracking/popping are isolated to the left arm. I am going in for rib resection/scalenectomy in December, and my surgeon has told me that the surgery will not eliminate this bizarre phenomenon.
What concerns me is that it is, perhaps, part of a broader congenital anomaly affecting my body's symmetry in general, and causing the TOS itself. We are all slightly asymmetrical, but I have noticed asymmetric differences in my skull, jaw, larynx, solar plexus, spine, pelvis, knees, hands, and so on. They all seem to line up in the same pattern - the left side of my body seems to be rotated a few degrees forwards. The left muscles on my back, therefore, are slightly higher than the matching right muscles, while the left muscles on the front of my body are slightly lower than the right muscles. My left leg is also longer than my right leg. My penis is slightly longer on the left side, causing it to angle towards the right. But it is also rotated along its own axis, like a cylinder simply being rotated towards the right. Very strange, and though it could be part of a delusion I've manifested after years of anxiety regarding my pain and disability with my left arm, I am fairly convinced that there is some correlation.
In any case, my left shoulder is hunched and rotated forward when at rest, and the muscles seem to have compensated for that and worked around it. I use my left arm in a very different position from how I use my right arm. The scapula is slightly winged, and pulled out away from my spine, while the deltoid and trap muscles are quite swollen and asymmetric on the left side. The insertions and origins of most of my muscles are completely different from left to right. Without knowing I have any problems, you would probably think I was quite normal. But when I take my shirt off and point all of this out to the observer, a look of wonder and comprehension will pop up on his or her face. My jaw is very asymmetrical - when I open my mouth, my chin lines up under the right side of my face, so clearly the rotational axis of my jaw is itself rotated 3 or 4 degrees right of my body's vertical axis. Very hard to explain in writing, wish I had a nice diagram or animation to show you guys.
These asymmetries would be all fine with me, since I'm getting the TOS surgery and the symptoms are supposed to diminish. But I worry that the vascular symptoms are only part of my disability. The cracks and pops prevent me from keeping my shoulders aligned rearwards, so I am stuck with a concave posture. If I retract my left shoulder, (rather than keep it protracted as it normally is) and try to perform basic tasks, I experience extreme pain, and enormous cracking and grinding sensations that make me think "Wow, this cannot be good for me." Sometimes, when I hold this posture, I get a very intense pain sensation that feels like one of the ribs connecting to the center of my solar plexus is falling out of place, or pinching something there. This is very frustrating for me, because my life was once dependent on exercise. I can hardly use my left arm, unless I keep it hunched forward, but in this position it will not develop muscle. Try as I might, if I work out only my left arm for a month, it will not get sore, and it will not develop muscle. When I should be feeling muscle fatigue from a long set of repetitions, I feel blood drain from my arm, accompanied by extreme charlie-horse type pain in my rear deltoid region. It feels as if every joint in my left shoulder is positioned slightly "off." When I retract my shoulders, even my elbow has problems. The tendon that crosses over the inward-facing 'point' of the humerus literally 'jumps' or 'slides' from one side of the bone to the other, causing a very strange sensation.
I am not sure what order my symptoms developed in. Perhaps the vascular symptoms of TOS caused pain and compression when my scalenus, pec minor, clavicle, and first rib squeezed my brachial plexus, so as a child I subconsciously kept my shoulder hunched forward, to give my brachial plexus some space. Then that hunched posture, over years of musculoskeletal development, indirectly caused the anomalous position of my arm's bones, which is now causing the popping and instability.
OR, perhaps the anomalous position of my arm's bones, and the brachial plexus compression, are caused by some strange congenital development.
I suppose it wouldn't matter, except that figuring it out might really make a difference in my recovery. If the first case is true, then logic suggests that the popping might eventually stop; if the surgery goes well, and the compression stops, I will be able to extend my arm and retract my scapula without cardiovascular incident, and my muscular development will eventually let my shoulder "fall" into place, where it is "supposed" to be. However, if the second case is true, it would seem that I will spend thousands of dollars on this surgery, exposed myself to a month or two of huge amounts of opioid pain meds (due to my immense tolerance), only to find that I STILL can't use my arm because the grinding won't stop.

So, I've brought this dilemma to you guys, hoping that someone may have, or have had, the same problem as me. If anyone has talked to a doctor about this symptom in particular, I would probably PAY to hear your thoughts. I am really desperate for help at this point, and it seems that even TOS-specialized surgeons just don't have the kind of detailed information that comes with being an actual sufferer of this syndrome.
I am hoping for responses from people who actually have solid information or history regarding this symptom - not unfounded opinions or assumptions. I'm sure I have thought of or tried nearly every recommendation that can be offered, including physical therapy, chiropractics, a chest brace, orthopedics, and so on. If you read this, and you just think it might help for me to do so and so, please consider that I have spent years dealing with this, and have taken a 2-year medical leave of absence from school just to figure out this problem. I'm praying for someone who's actually gone through it, or has read about it, to give me some insight or a recommendation. Just to hear someone say they KNOW what I'm talking about would really make a huge difference psychologically. This syndrome has been the bane of my existence for a long time. It has driven me to heroin addiction, suicide, and catatonia, so if you know what I'm talking about, PLEASE don't skip past this post. Even if you have no idea what to do about this problem, just to know that I'm not the only one means more than you can know. I feel so lonely, even amongst others with TOS, in that it seems I have some kind of far-reaching congenital defect in my left shoulder. I want to move past this phase of my life, and leave the anxiety behind me so I can accomplish my dreams. I hope one day to be a biochemist and geneticist, but I've had to leave school because of the disability all this has caused me. The pain and uselessness of my left arm, however, is nothing compared to the anxiety and depression that has come with, at first, struggling to determine the cause, and now, struggling to determine the treatment. I wish a superhuman doctor would just arrive at my doorstep and answer all my questions. Even if it can't be treated, I just want to know so that I can let it go and start my life. I bet some of you guys also know what it's like to want that, so badly, that you have been driven to attempt to take your own lives.

In summary, I'm looking for anyone who has experience with, or knowledge of, shoulder grinding/popping and asymmetry, comorbid with thoracic outlet syndrome.

Thank you so much for your time,
Shane H.

I want to wish you the best. Any information I could provide will be anecdotal based on my child's experience so it doesn't adhere to your limitations on information that you are looking for. I hope you find something that works for you like my child found.

Hi Shane,

You might want to look into scapular bursitis and crepitus. (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3445084/)

I have NTOS on both sides, diagnosed by Dr. Donahue at MGH. My right side is considerably worse than the left and I have a lot of cracking, grinding in the scapular area along with pain on this side (although doesn't seem as extreme as what you are experiencing). 2 shoulder surgeons told me I have scapular bursitis. I'm not sure about this diagnosis since before seeing Dr. Donahue I was shuffled to literally dozens of docs over the last few years trying to get to the bottom of the bizarre, debilitating TOS symptoms; none of these docs had a clue as to the problem and advanced all sorts of incorrect diagnoses (e.g. dystonia, fibromyalgia etc.), so other than Dr. Donahue's evaluation, I'm pretty skeptical about what any other doc says. However, I plan to follow-up on possible shoulder issues with yet another shoulder specialist. Dr. Donahue didn't weigh in on shoulder issues "separate" from TOS.

Hi Shane, Not a doctor but most likely it sounds like "atrophy". I have been suffering with this for too many years to count. Have been told there is nothing that can be done. There is an alternative method you may want to look into that no doctor will tell you as they are not trained in this area, but a nutritionist may. Fish oil may be of help but just that a little help as our body doe not make this on its own. Best of luck and keep on fighting. I have found that the least narcotics or pain meds and exercise has lessened the pain and awful side effects of these drugs. Also Vitamin B-12 is another item that helps greatly for the nervous system. PS: Best thing of all and a message to all. "Sugar" is an enemy and in most all foods today in many forms. Use Setiva a natural sweetener as a substitute and you will see a marked difference in your health overall. Hope this helps.

Inflammation in the tendons and ligaments will cause this along with muscle imbalances. I had it bad as well, but taking supplements and therapy has helped a ton. Sugar is a huge cause of inflammation along with diary.

I've been doing a lot of searching lately and I was surprised to read your article. I am too going through a lot of the same symptoms you have as well. It started in April 2014. I woke up with a kink in my neck and it's never gone away. At first I felt it would just be a week of having a strained neck and everything would go back to normal. As the days progressed I started to notice a loud clunking / popping sound in my right shoulder. I didn't pay much attention to it at the time. I'm usually in the gym 5-6 days a week and go through a heavy lifting program. I continued to workout and noticed as the days went on that my shoulder was getting dramatically worse. I saw my doctor and they wrote it off as crepitus or an inflamed tendon. I knew it was much more. I had X-rays done of my AC joint and my doctor said everything was normal. I knew it wasn't. As time went on I noticed my right shoulder had dropped forward and I was having a tough time flexing my right pec , my right lat and my trap. I tried working out arms and noticed my bicep and tricep weren't activating as if something was blocking the ability to let blood flow into the muscles. Shortly after I noticed my body felt shifted slightly forward on the left side making me feel crooked. All muscles on my right side from my glute up are in spasm and if they stay that way for too long I'm worried they will start to go into atrophy. I've been to chiros, rmts , had X-rays , I've had ims treatment. I'm seeing a physio now and I finally went to a specialist after several misdiagnosis and odd feelings towards what my issue is. The specialist I saw told me the crooked feeling was due to my tailbone being out. He reset my tailbone and I felt a lot of pain to away and I started to walk straight. I spend a lot of time in front of a computer for my work so it's hard to heal when doing exactly what makes it feel worse. As I thought I was starting to progress I reached into my pocket and felt the deep clunk in my shoulder. The pain comes from my neck into my rhomboids behind my shoulder blade and into my shoulder. My shoulder cracks in 4-5 places and no one has any idea what is causing this. I am scheduled for a cat scan on my shoulder and MRI on my neck. Until then I am dealing with this pain and have been forced to stop the gym completely. It leaves me feeling hopeless knowing the one thing I love to do is gone for now. Even with laying off the gym the shoulder crack persists. Nothing seems to stop it. The muscle going from my neck / chest to shoulder is rock hard and will not loosen up. The tension in the neck hasn't gone away once in the last 6 months. It's nice to hear that I'm not the only one dealing with this. I belive it is an inner alignment problem. It's strange as this started after a 10 week cycle of testosterone.

About 2 months after my cycle I started to notice these issues. To add to it my right trapezius is completely atrophied I've tried everything to feel pain in or work it out or stretch it. Nothing works. If anyone had experienced anything similar I would love to hear your input. I've had blood work done and everything is normal I have had no indicators of any underlying issues to solve this problem. I hope it helps to let you know what straightened me out as far as the crooked feeling but I'm still in the dark about my shoulder.

If you d got any info or learned anything more to fix it please post so I can try to fix my issue. Sorry long post I forgot to add all my joints started to crack when this happened. My hips my knees my elbows it is terrible. I've really had no relief and I was taking a lot of aleeve and Motrin to help but nothing really helps.

Hi, sorry for what you have been through...hang in there...about the shoulder: a partially dislocated shoulder will cause a popping noise as it shifts in the socket. It might not show up on tests as an imcomplete one but a good pt will be able to feel that going on.

What did a shoulder specialist tell you so far? They should recommend tests that will reveal other problems there like bursitis, ac joint issues, etc. If you do have an overlapping problem, don't despair as dealing with even one can really improve how you are feeling...

Yes, I have this where my left side (was my bad side by I've now had surgery on that side so far) had the hip rotated forward, thus causing the leg to seem longer.

I had surgery a few months back, I've gone to a chiropractor a few times, did some stretches on a yoga block, and my hips now stay in place, for the first time in ten years, very easy now, lol For the yoga block stretch, what i did was put the yoga block under my right hip and let the left side drop down. This should help with everything waist down, but the problem arises from the scalene being tight and pulling everything out of wack.

I had several steriod shots in the shoulders and got some grinding in the joint. At this time, my physical therapist is working with me on strengthening the rotator cuff muscles, these kind of exercises might help your shoulder. Also, try doing pushups, but against the wall, this will strengthen the lower trap and rhomboids, do this as much as you can, several times a day. It sounds like you are at risk for a winged scapula, so try to get things strenghtened asap.

Finally, based on what you said about having your shoulder rounded forward, it sounds like you likely have pec minor syndrome as well. Talk with your surgeon about doing a pec minor release at the same time as the rib resection/scalenectomy. If your surgeon doesn't do the pec minor release surgeries, get a different surgeon, because they really don't know enough about TOS, and you really only want the very best you can find operating on you.