Hi I am a 35 year old woman in Portland Oregon. I was in a MVA in 2005 hit on drivers side door, when I was hit I held on to the steering wheel with my right arm and took the impact, whiplash.

Since then I have had a lot of shoulder pain. My doctor at the time checked to see if I had a torn rotator cuff which I did not and basically stopped dealing with me after a few months. A year later I went back, the pain left was all in my shoulder and I also told her at this time my ear was plugged almost all the time (yep my ear has been plugged most of the last 5 years!). Well I have been living with all this since then. It comes and goes in severity but is never gone. I got a new doctor a couple years ago, she is GREAT!

Anyway, my "arm" has been giving me a lot of trouble lately. The pain has returned to an intolerable level. I wake up in the night and literally have to pick my arm up and move it because it is completely numb. Often I happily go to bed and then remember "oh, yeah, my arm is going to go to sleep all night." I wake up and my hand is swollen, not a ton but it's tight when I squeeze it and it's noticeably more puffy. At times my neck gets stiff to where I can hardly move it comfortably and I have shooting pains down my shoulder blade, though this isn't too often. My shoulder blade sometimes feels like it's sticking out just ever so slightly. Laying on my back I always have to adjust for this annoyance. My hands can go numb at any time if they are raised at all and again when I am sleeping. Doing things like helping my 3 year old twins get dressed makes my arms soooo tired. I often have to drop them down a few times to complete a task like this. Typing makes my arms tired and gives me a pinching feeling in my shoulder. My fine motor skills in my right hand have declined. I spend half my morning dropping things, feeling like I have to think about how to hold a pen, stuff like that that just isn't "normal." The strength in my right hand is noticeably weaker, though both arms get tired and go numb and tingle. I have a loss of range of motion in my shoulder and when I tilt my head from side to side, it's very limited too and I can feel my muscles pulls down from my jaw! I am constantly doing stretches to stretch out my chest because it just feel bunched up. I literally joke with people saying...if I could just cut a couple muscles I swear I'd feel better. Maybe it's not a joke! Let me also say, I feel strong, I feel happy, I feel like I can do anything I want, but certain movements remind me my arms weigh a thousand pounds, my hands can't "think" on how to move right. Everyday it happens and each time I "feel" like it's an isolated incident, but it's not. And everyday, all day I have pain in my shoulder, around my neck and lower-back of the head headaches. Much of this I have learned to live with as no diagnosis, what can I do. But things are worsening. My hand not working right kind of freaks me out a little bit lately. This hand thing is new btw, the last 6 months, it's constant and only getting worse actually.

So when I have gone to doctors about this they say it's all unrelated (ear, neck, shoulder...), but I have known in my gut it is. I can FEEL it's all related. So when all these symptoms, progressed to the point where I couldn't ignore it a few months ago, I went to my great new doctor. MRI for shoulder showed tendonitis. She ordered an EMG test to check for carpel tunnel, negative. But the EMG did come back abnormal, nerve damage to my C7 nerve and tricep weakness. neurologist and my doc figured I had a C7 cervical herniated disc, this could make sense but would mean shoulder was a separate issue, again, I just couldn't get on board with this. Cervical MRI shows I am right. My neck has lost it's c curve (spastic muscles to blame likely) but it's not my neck. So now after she talked to a neurosurgeon regarding my cervical MRI he has suggested TOS and an MRI to check, if not further testing for MS. I have done my research on both and for the first time every single symptom rings absolutely true...TOS! I can't pinch my pinky and thumb together as one website stated is a diagnostic test. I lose the pulse in my right arm with certain neck movements another test. All of it. I feel relieved after all these years to be moving towards an answer. I still haven't had it confirmed but this makes so much sense!

So I am not asking anyone to confirm this, again, I don't even feel like I need it. For me at this point it would be like being 9 months pregnant and needing an ultrasound to confirm it! I KNOW this is it.

...But what does it mean? What are the different types (i am sure the various mri's i have had would have shown an extra rib! so i don't think that's it). What does it mean to have TOS, all the explanations for it are so difficult to understand.

Other questions: I also wake up now that it has gotten so bad, and my legs will sometimes be asleep, or my hip feels out of place and it's hard to walk for a bit in the morning. For as long as this has been going on my right big toe has also been numb more often than not. Can this lead to issues with your lower body? Or maybe I just have really bad circulation. Also there have been a few times that my heart has felt very fluttery for about 20 seconds. It doesn't hurt but I feel like I could pass out, and it doesn't feel like anxiety or heart palpitations, it feels very different. I'll totally agree it could one of those things but I have had both of those in the past and it's just not the same. I have to sit down and wait for it to pass, like a butterfly in my chest, not irregular thumping. Makes me nervous. I know this is a vascular thing this TOS so I am just wondering if anyone experiences anything like this, if it could be related. It's happened a few times and it's been when I was on a walk.

Sorry this is so lengthy! Six years of waiting to figure out what the heck has been wrong with me!

Any words, really, any, are appreciated: similarities, stories, advice, treatments...