My winged scapula (left and right) are caused by inflammation of the nerves in the brachial plexus. In this particular case, it is the nerves that eventually feed the long thoracic nerve- which travels down over the scapula and supplies enervation to muscles that should support the scapula in its correct position. The result is that the scapula drops and pops out when you exert those muscles trying to extend your arm, hence the term "winged". There are a few things that can cause this, but the top two are Neuralgic Amyotrophy (aka Parsonage Turner Syndrome) and FSHD, a type of muscular dystrophy impacting the muscles of the face, arm, scapula and leg.

I had also had a prior issue impacting my right hand grip strength. When I checked the internet for “Winging Scapula Causes” I lucked out and got to a page that had a differential diagnosis between the top causes, and rapidly narrowed it down to Neuralgic Amyotrophy. My doctors at the time had no clue as to what the cause could be, so when I came back to them with what I had found, they laughed. How could I be so bold as to try to diagnose what they could not diagnose and on the INTERNET of all places? As I said I got lucky. When I checked into NA as a cause, I saw a study suggesting that some people with winged scapulae also had a problem with their hands similar to mine. That cause was listed as Parsonage Turner Syndrome, aka NA. I had my smoking gun. They had previously suggested that my hand issue was extremely rare. They also said that winging scapulae were rare. I had found something that could cause both issues, and still they laughed me off. So, that is when I saw a specialist.

That specialist (one that I did not have to pay for) laughed at my doctors and told me that I was quite correct in my diagnosis.

Tests? I have had numerous EMGs, MRIs, X-Rays. None of them really helped with the diagnosis, but were used to rule out other things I had no symptoms of.

This has sort of attacked in stages, or two different times between 2000 and 2006. The first time it was my hand, and I was left with right arm weakness and partial paralysis of my hand. Some of that has returned, but not all. The second time it was primarily to my shoulders. I had severe pain in right shoulder followed a month later by winging and development of TOS. The eye stuff happened near the same time. Now, NA can impact any nerve plexus, including cranial nerves, but usually does not impact the optic nerve. So, not sure there is a direct link there. It can impact breathing by partial paralysis of the phrenic nerve. Most common is damage to the shoulders. It also can impact your back and legs. Cool, finally an explanation to my aches and pains. It is not life threatening, unless you like to breath I guess

Surgery is not usually on the table since most people usually will recover most lost function. . . But, that does not mean my scapula will ever get better or that my fingers will ever be normal. You just learn ways to cope. If you have repeating attacks like me, you learn to cope over and over. Hopefully, I will not have to learn how to breath with help, but I know it happens and has happened to people I know.

Sorry this is so long. . . It is meant as an answer to all three posts since mine.