Hi everyone,
I thought I'd introduce myself and share my story. It's a lot like the others I've read on here, but for me it was really comforting to know that I wasn't alone in this, so I'll share it anyway.

I recently was dx'd with bilateral nTOS, at least partially due to my bilateral cervical ribs. Mine are full sized, so I'm sure that can't be helping.
I started having symptoms when I was about 12 - I'm 34 now, so it's been a long process. I can look back now and pnpoint that my initial problems were probably from carrying around a heavy backpack for school, plus I was shy and picked on a lot so I developed bad posture and a lot of stress. I started having bad episodes of muscle scpams, got sent to pt where they tried posture re-education and strengthening exercises. Didn't help. I dealt with it and ignored it for a long time.
My sx are: lots of muscle spasms, esp with stress. Serious arm fatigue when i do anything shoulder height or higher. Doing my hair sucks - it's really thick and curly. Nubmness and tingling, hurts to do a lot of fine motor hand work. Hurts when i bend my neck down for too long. Headaches, teeth grinding. Everything is typically worse on the R side.
college I started having episodes where I was in excrutiating pain and could hardly move,went to the ER and drs and got told I just needed to relax. Fun times. (My pt recently figured out for me that those episodes were caused by a positional fault in my ribs. My TOS will flare, and the spasms pull the rib head just a tiny bit out of joint. Such a little thing to cause so much pain!)
Fast forward ten more years, I've seen a neck and nerve specialist, they said I have mild disc degeneration and need more pt. Doesn't help. My pcp asked if anyone had ever xrayed my back - nope - so he took x rays, found the ribs, and said there's your problem.
That led my research to TOS, but it still took 3 more years and 4 drs, 3 mris, 2 cervical epidurals, before I found a dr who knew about tos and didn't blow me off.
I'm seeing Dr Gelabert at Ucla for my surgery next week. He's been really great to work with, although his office staff stinks! Dr G is very thorough, obviously knows what he's talking about. He's always on time, but he never rushes me through an appt. We talked through all my exams, pt, history, symptoms, and he ordered a lidocaine block test, which I responded well to. He didn't pressure me into surgery either, just let me decide what I wanted to do. I feel good about having him do my surgery.
Dr G gave me a nice packet about the different studies he's done, comparing results of surgery with different approaches and dx tests. He's put a lot of thought into everythign. And when I couldn't get his office to call me, I emailed him like he said to and he got back to me within a few hours. I even emailed him about some worsening symptoms last week, only to get an auto reply that he is on vacation, but he still emailed me back days later, during his vacation. Awesome guy. I'll try to let you all know how surgery goes.

Bethany

Yep , those symptoms sound familiar. All the best for your surgery.

Hi Bethany,

Thanks for your post. Have you had surgery? If so, how did it go? Were just your cervical ribs removed?