One in a Million?

In past posts I've mentioned having bad pain days or listening to my body and having to cool off on the work out.  I even mentioned my winged scapulas on my old fitness blog but what I always thought was normal pain (among other things) this past year 6 months I learned it definitely isn't.  After a long talk discussion intervention cry/complain session with my friend; I decided I'm ready to tell people what's going on.  My friend told me I didn't own my pain; as hard as it was to hear, she was right.  I didn't own my pain; I'm not mad at God, genetics, my family or anyone for what I have.  I'm just tired of dealing with it.  I'd like to sweep it under the rug rather than work through the process of letting people know what is going on.  Life is easier that way; if you don't talk about stuff.  So here it is.....I have a relatively rare, complex, and controversial disorder called thoracic outlet syndrome... winged scapulas (shoulder blades), and a few bulging discs in my neck/back.  So what does that mean? In short, I live with chronic pain & don't feel like a healthy 22 year old. 

My winged scapulas....yes, I'm well aware they look like elbows on my back

Elongated transverse processes that
are considered to be cervical ribs

Thoracic outlet syndrome (and winged scapulas for that matter ) is typically caused from trauma due to injury but can be caused from genetic abnormalities.  I fit in the less common category- genetic abnormality.  I have elongated transverse processes on C7, basically an extra rib that has a fibrous band attaching on my collar bone area.  This compresses the vascular and nerve supply to my neck, arm, and hands leading to pain, tightness, numbness, poor circulation/pulse (no blood supply if I raise my arms above my shoulder), and a whole lotta muscle weakness.  Because I was just born with this and have had pain for most of my life physical therapy didn't do much for me but increase my pain and frustration while decreasing my bank account.  It sucks but at least I tried it; more importantly it lead me to my discovery of TOS.  I first went into PT for my winged scapulas but once my pain started getting worse and spreading to other areas of my back,neck and arms my PT thought it was TOS and eventually sent me to a specialist (after much debate, running a half marathon, and after people started to notice my pain & became concerned I went). 

Clearly not me, but
similar tape job!

So where does this leave me? Being a science project, an estimated one in a million case (depending on what site you look at)?  Confused and unsure.  I ran my first half marathon this summer and I'm sure people would love to say this act caused all my pain and I never complained before really running.  I didn't complain because I didn't know it wasn't uncommon and I could manage it.  The pain has gotten worse and it affects being active in a large way.  I never used to enjoy running but now I do and TOS makes it harder than it's suppose to be.  For example, during my half marathon training I taped down my shoulder blades with pretty strong tape; I'm told it's about 2-3 steps above or stronger than kineso tape with the hope to decrease the compression and keep my shoulder blades down.  Strengthening my upper body is kind of out of the question.  Don't get me wrong, I attempt it but it kills me, knocks me out for at least 2 days and I can tell when I need to lay off on the running and walk, switch activities but honestly it doesn't just affect exercising.  More and more often I can't open jars, twist off beer bottles, or have my hands go numb/tingling while doing my hair or sleeping. 

I'm not okay with the possibility of "altering" my lifestyle, stop being me, or as one doctor told me, "You may have to be okay with the fact you'll be inactive for the rest of your life."  I have a degree in health and exercise science and you want me to be inactive for.the.rest.of.my.life.  REALLY?!
I'm looking at 2 options; I can either have surgery or I can live with it and suffer the consequences of increased pain, decreased strength & threat of nerve and arterial damage.  I'm 95% confident on what I want to do but still need to look at all the pros and cons.  I'm very logistic and like to see things on paper, see what I'm dealing with.  More than anything it helps me accept change if I can guesstimate how things will go.  I don't want people feeling sorry for me; I just want people to accept my decision and help me through the process.  This is me, one of a kind; owning my pain, my disorder, my life. 

* Not my xray- picture taken from NYU School of Medicine-Dept. of Neurosurgery