Real People, Real Stories of TOS

Hi, I'm Christine.  My whole life, I never felt quite normal or like other kids.  My parents, being parents, always told me I was special.  Well, it took me a while to figure out just how special I really was.  

After trying every treatment option, taking 2400 mg of Advil a day, 2 MRI's, a chest x-ray, and a CT scan, I learned what thoracic outlet syndrome (TOS) was.  I was diagnosed with true neurogenic thoracic outlet syndrome and a possible vascular form on both sides of my body just after I turned 22 years old.  After all of these tests, I found out I was born with an extra rib in my neck that pointed down toward my rib cage, a fibrous band connected this extra rib to my actual 1st rib, and winged scapulas or shoulder blades.  Additionally, my 1st rib is wider than normal, and some of the muscles in my neck are fan shaped (learned after the surgery), and rib cage is more narrow than other women of my height and weight.  

My winged scapulas

I know what you are thinking, "How did this girl live with TOS her whole life!?"  I'm not really sure.  My simple answer is this:

1. For the longest time, I thought everyone lived in pain from being active and it was just part of life
2. I wanted to be 'normal' more than I wanted to be in pain (man I did not want to be different, being a kid is hard enough!)
3. I smiled everyday and tried to block it out - I basically lied to myself every day ;)

I'll start at the beginning of my story.  I grew up on a farm in Northwest Iowa, where hard work, education, and being tough rule.  I was sneaky, constantly trying to hide my pain.  All I wanted was to be a normal kid.  I didn't always tell my parents when I was in a lot of pain, or that my hands would be numb, blue, and cold all the time.    My earliest memory of feeling different was sleeping on ice packs when I was 8 years old to help with my back pain or when I'd French braided my hair my arms and hands went numb or when I'd write for long periods of time and my hand/arm would be exhausted.  I even had special pillows when I was about 6 years old, that my mom bought from the chiropractor to help my neck pain.  I was teased by a few boys in  my class for having breasts on my back because of my winged scapulas.  I learned how to drive with knees and fell in love with hooded sweatshirts that had pockets for my cold hands. 

Angels aren't the only ones with wings ;)

I danced ballet, tap, and jazz when I was little and played sports until I was in high school.  It hurt (a lot), but I just thought it was part of being active and tall for your age. The older I got, the harder it was for me to hide my pain, brush it off, and put on a smile.  I first went to physical therapy when I was in college for my 'angel wings', as I like to call them.  It was going okay, but the more I went the more my symptoms got worse and the wider they spread.  I nursed my symptoms for close to a year and half before going to a specialist.  I can't be mad at my physical therapist for making my TOS worse because he was the first person to ever mention TOS.     

My symptoms were:

• Pain in my shoulder, arm and neck
• Chest pain, tightness of chest- some days I thought I was having a heart attack...at the age of 21
• Numbness in my fingers/hand that came down my arm from my neck
• Dull ache in my neck, back, shoulder, arm, hand
• VERY weak grip- I constantly dropped things and couldn't open water bottles or jars
• Muscle wasting in my hands
• Swelling of my fingers and hands
• Heaviness and weaknesses in my neck, arms, shoulders, hands
• Blue fingertips and knuckles
• White hands from time to time
• Cold sensitivity/poor circulation to my hands
• Sweaty hands
• Difficulty sleeping
• Difficulty sitting or standing for long periods of time
• Being active made all of the pain symptoms worse.  Normal day-to-day activities like cooking, cleaning or laundry would increase my pain and would just - knock me out.    
• Later, I found out that I had almost no pulse or nerve supply to my arm/hands if my arm was raised above shoulder height and my blood pressure would become really high to try to push through the compression
• And several other limitations

The day I learned I had TOS - my world froze.  I was told by a few health care providers that I may and would most likely be inactive for the rest of my life and I needed to take the time to be okay with that.  I WAS 22!  I had just graduated with a degree in Health and Exercise Science - Sports Medicine and I was about to start my Masters in Public Health....and I want to go to medical school.  Being inactive was not an option! I tried making a joke of the situation (more so than I already did) calling myself a science project that no one knows what is wrong with me.

I tried yoga, Pilates, two different physical therapists, saw several specialists, and wondered if I could keep throwing money at a problem I could not solve.  No one really knows what it feels like living with TOS, the daily struggle, and why you just can't do something.  As a young adult, it's hard - very hard.  I found a surgeon that was a TOS master.  He saved me, brought me back to life.  I honestly believe that - He gave me back a small piece of my life and I am grateful.      

Post Surgery Gear - looking good!

In 2012, I had surgery on June 26th and 29th.  During the surgery, my surgeon entered through my armpits, he shorted my extra rib, removed my 1st rib, removed the fibrous band, removed a few muscles in the front side of my neck and a lot of scar tissue.  He untwisted my nerve, artery, and vein and rerouted them from my neck down to my arm.  I was in the hospital for a week, and am still currently recovering.  I can lift 10 pounds, better than the 5 pounds I had gotten used to!  I still have pain and soreness but most of that is just from the surgery.  I go to physical therapy once a week, have TOS massages every few weeks, and focus on having correct posture.  Recovery is a very slow and long process but I can't believe how bad I felt before surgery. I can't believe all of the emotional struggles I have been through this past few years and how my life is slowly starting to change.
 

After 23 years, I was finally able to blow dry my hair this summer without my hands being numb, arms becoming heavy, sweating like crazy, and being so tired at the end.  To me, the little things matter right now.  One day, I will be able to do so many other things - it all just takes time.

I will always have TOS.  I will always be a special little science project.

 I will always be one in a million - TOS won't take my spark