The Devil Within: Thoracic Outlet Syndrome

Spring, 2011

One rainy May day in Mankato, Minnesota, I noticed a tingly pain run down my left shoulder blade.  I thought, I must have pinched a nerve.  I should probably stretch.  So I stretched.  Two days later, the pain started again.  Then continued on for days, weeks and months.  The pain escalated and shocked me. It woke me up in the middle of the night to throw me in front of a train.  It traveled down my arm and in my neck with a mission to make my day a living hell.  It held me down with all its force on the most beautiful sunny days and soaked my head with depressive dark thoughts on the coldest of winter days.  It ripped apart my friendships, relationships and injected fear in me to meet new people.

It took over my life, and I let it.  Temporarily. 

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The doctors ran all of the tests:  MRI of the neck, shoulder and spine.  CT of the Neck. X-ray of the rib cage, shoulder, neck and spine.  I went to a myofascial release therapist that worked awkwardly on my fascia while I was covered in a cold, itchy sheet.  I went to chiropractors in Mankato and near my hometown in Kiel, Wisconsin, while trying to visit my family and ignore the incredibly powerful situation I was pinned in.  Doctors tried releasing the constricted muscles in my neck and shoulder, trying to figure out why they tightened day in and day out.  I was given muscle relaxants, pain killers, anti-anxiety medication, sleeping pills, bio-freeze, icy-hot, ice packs and heating pads.  I had mood swings and withdrawals and was late for classes and for work and turned into a zombie with this pill and puked off of that pill and didn't eat on that one.  My medicine cabinet slowly started looking like a pharmacy.   

Fall, 2011

I will never forget my first major breakdown.  A doctor in Mankato told me it was all in my head.  He suggested I see a therapist immediately and start anti-depressant medications without even examining me or have me dress in one of the many fabulous hospital gowns I've gotten to know.  I stood up and walked out of the clinic and managed to make it to my car with my wobbly legs.  I dialed my mother, and repeated what the doctor said.  She coyly said it could be possible and it would be a good idea to look into it.  (At this point, I don't think she knew what to say, even though I needed her.  She was one of my only full supporters through this journey.) I politely hung up the phone.  Anger was boiling through my veins, my arteries, my nerves.  Tears welled up in my eyes as I rested my head on the steering wheel.  I sobbed for an hour in the parking lot of the clinic that day, and a little piece of hope inside me dwindled.  I wiped my makeup stained tears off my puffy face and the steering wheel, turned the key and drove home.  

Some Struggles.

I couldn't participate in certain sports.  I had to sit out during my running class in college because running hurt.  I felt pathetic.  I had a hard time completing my duties at work.  I looked like I had the easy jobs to other co-workers, who slowly resented me.  I broke down in the back room crying because I wanted to do more.  I wanted to have the energy to work more than 8 hours.  I wanted to be normal again.  I could drink 4 cups of coffee and still fall asleep while operating a machine.  I never did, thankfully.

I didn't want to run errands with my mom.  And when she asked me to tag along I almost always ended up snapping at her.  It wasn't even what she was saying or how she was acting.  The irritability was growing uncontrollably inside me and I would yell at her for no reason or give her attitude.  Then I would go home and beat myself up for hurting my mom yet again.  My brothers told me to be nicer and don't shout at your mom or my favorite: quit being a bitch.  But I couldn't control it.  I was losing patience and losing my own battle to myself.

I always wanted to take naps.  Whether it was at my grandparents' house watching the football game, a shopping spree with my family or a movie with my friends; it was all the same.  My mind was set  on 'nap' mode.  The pain was exhausting.  I came up with the lamest excuses for getting out of activities and outings.  I even used 'Dimitri puked and I need to clean the carpet' many times or, 'Ellington is acting funny, I think I need to investigate.'  (Poor cats, they always get the bad image.)  I would say anything to get out of everything.  My body was exhausted from hiding the pain or trying to make it go away.  My mind was exhausted.  My whole being was defeated everywhere I went.  And I couldn't explain it to anyone or tell the truth, because I didn't have an answer myself.

I took pain killers (non-narcotic: my choice) for months straight, which caused a new variety of strange symptoms.  Headaches, depression, stomach upset, tiredness, fatigue.  Wait, wait, wait, didn't I have enough to deal with?  When I decided to take them, my days went by in a blur.  When I didn't, they dragged on like a bad hangover.  I could either choose to be drowsy on pills or miserable and cranky without them.  It was a personal choice of who I wanted to be when I woke up, every single day.

I stayed inside for days on end, watching movies in bed during college, drowning in my own self-pitty, depression and pain.  I was given a TENS Unit to 'distract' my body from the pain.  I called it my 'Robot Friend.'  I embarrassingly had to hook it up in the middle of class during college, while nosy eyes were burning my body.  No one asked what it was, they just all looked at me like I was different.  And I was.

Children.

I was put in a sling for 2 months in the fall of 2012.  I volunteered for a 'girls' camp and the girls in my group decorated it with foam shapes.  I couldn't explain to them what was wrong, but I didn't need to.  Readying the glue gun, each one wanted to help glue a silly shape on so my sling was 'pretty' and would make me smile. It did.  

The children I babysat were easy on my arm and showed so much compassion that I don't think an adult could hold with my situation.  They were only two and four.  If I was having a really bad day and didn't have enough energy to take them to the park, we would sit and read or play Legos.  Every time I came over they asked me how my shoulder was doing.  I would reply, "Better now that i'm here with you guys! Let's play."  They would hug or pet my shoulder telling me they hope I would feel better.  I came over after one of my really disappointing doctor appointments and the children knew that something was wrong.  The four year-old said, "You know what makes me feel better when I am hurt? Popsicles."  We ate popsicles and watched a cartoon, one child snuggled on each side of me.

My best friends' daughter would draw pictures for me when I wasn't feeling well.  She would bring me a snack to make me smile.  She kissed my shoulder better.  She sat with me watching children's movies and wiped away my tears if I was in pain or upset.  She ever held my hand.  So much love and support from a little girl, not even 5 years of age.  She warmed my heart every day I felt down; she was one of the only reasons why I wanted to get out of bed in the morning.

Looking back, I've come to the conclusion that children near and far were my biggest support systems.  It didn't matter what the doctors said or how many adults thought I was crazy or faking it.  It didn't matter what the tests showed or how many tears I've cried.  They just wanted to help.

Spring, 2013

It was time for me to graduate and move on with my life.  But wait; how was I supposed to do all the things I wanted while in daily pain?  With daily depression and doubt?  I decided to move back to Kiel, Wisconsin, until this was resolved.  I put my dreams on hold because of a ghostly rare condition that was living inside of me.  I tried to ignore it.  I moved into an apartment on my own.  I set up payments for my student loans.  I started car shopping.  I continued to work for my parents to not only help them, but to see their faces every day; whether they were happy or sad.  I finally felt like an adult.  But I couldn't hide in the shadows.  I was an adult still in pain.  Still depressed.  Still falling apart.  

The Funny Thing About Support.

I had no support system besides the very few friends that stayed with me through this and didn't think I should be sent to a mental institution.  There were many occasions when I overheard friends complain about me.  It came as a shock first, and a rage of anger exploded through my body.  I felt betrayed.  But then I thought about the situation, and who could blame them; I was annoying and complained about my pain daily.  And who knows, maybe I was desperately crying out for help, even though I knew they couldn't help me.  I've held countless hands and wiped millions of tears from friends of each gender, but I wasn't worth the time and effort in return.  Albert Camus once said, "Don't walk behind me; I may not lead.  Don't walk in front of me; I may not follow. Just walk beside me and be my friend."   

I lost a lot of friends and respect for people through this journey.  And sometimes it makes me feel empty inside.  Sometimes I wish people weren't so selfish and could drop their phones for two minutes to listen to a friend in need.  On the other hand I think of the many people that did help.  People came out of the darkness on Facebook and took the time to message me.  People I haven't talked to in years.  I had classmates connect with me to share their similar experiences.  As I sit here typing this, my heart warms.  Why spend my time thinking about the friends that weren't there, when instead I can smile at all the memories I made with the people that could stick it out with me through the storm?  Those are the memories I will hold onto forever, while the others are washed away with the dark current of my past.

Fall 2013: Is this real?

I was referred to Orthopedic Therapy by my Orthopedic surgeon after my Arthrogram showed yet again, nothing.  Walking into the therapy room, I was uneasy and honestly a little pissed.  I've tried physical therapy before and it hurts.  I wasn't about to make my life more miserable.  I met my therapist, let's call him Frank, and his smile didn't even help my anger that was built up inside me.  I went into this negatively and with lots of doubt.  After a 5 minute of get-to-know-each-other and a physical exam, he diagnosed me with Thoracic Outlet Syndrome. "Just like that? You know what it is," I questioned Frank.  He chuckled, "I went through a miss-diagnosed condition with my shoulder for a couple years.  That's why I decided to become a therapist: to help others that were in my shoes.  I happened to study a lot about this syndrome and you fit the symptoms spot on." And just like that, my mystery condition had a name.  I thought to myself, I have Thoracic Outlet Syndrome. I'm not crazy.  I knew it!  Thoracic Outlet Syndrome, or TOS, is a compression of the nerves or blood vessels that serve the arm and hand, as they pass through the base of the neck and behind the collarbone on the way to the arm.  This produces symptoms such as: pain in the neck, shoulder arm, numbness, tingling, and weakness in the hand and arm.  I owe Frank a lot of my peace of mind, and I should probably send him a fruit basket.  

The Light at the End of the Tunnel, 2014.

I went back to my Orthopedic Surgeon in spring after therapy progressed my symptoms.  He gave me the name of a doctor in Milwaukee that specializes in TOS, and off I went.  My Angiogram confirmed the compression of my subclavian artery and vein, and surgery was set up for the following week for a 1st rib resection.  My doctor explained to me that I have a combination of 2/3 types: Venous and Arterial.  The only treatment is surgery.

[Side note:  My surgery was July 1st, 2014, at 8:00 a.m.  The surgery was successful and I am in the healing stages residing in my apartment in Kiel, Wisconsin.  A post-recovery blog will be shared!] 

A New Day, A Real Smile.

My surgeon was doctor #17. 17 doctors, three years of pain, depression, losing friends, gaining guardians, moving three times, completing college, frustrating my family, a variety of emotions, countless tears, self-doubt, self-pitty, finding myself, and making peace with my life.  A journey I will never forget.  A journey that I am sharing because I never want someone with TOS to think they are alone.  

TOS gives a different kind of sick, self-destructive, deep pain.  A pain that doesn't affect just the carrier, it affects everyone around them.  It affects the lifestyle, emotions, and patience of the person it is within. It tests them every single second of every single day. And it doesn't stop until it has massacred every single aspect of life.  But the question is, are you going to fight back or let it take you over?  I answered that question with a raging bull inside of me.  It's my turn to steer the reins.  It's my turn to be happy.  It's time to take back my life.  

Equanimity, 

Kelsey Thielmann