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Amanda's TOS Story 

My TOS story is long and dramatic but I will try to keep it as brief as possible!  I grew up on a farm and I always had trouble doing things my brother and sister could do.  For instance, in the hay field, I struggled lifting the bale up to the wagon. so I was eventually labeled the "lazy" one.  I always thought the reason people didn't like washing windows was because it hurt them!   Things like carrying a purse either on my shoulder or as a handbag always gave me trouble.  I guess I have had problems all my life but it was "normal" to me so I never complained.


Christmas Day 2001 I was helping my mom fix dinner, when I reached to get something out of the cabinet, I had a sharp, stabbing pain in my shoulder.  It took my breath away.  I didn't say anything to anyone - just thought it was very odd.  Later that day, I had so much pain in my shoulder that I could barely lift my fork to my mouth. 


Two weeks later I started my last semester of nursing school.  I started noticing how cold and white my right hand would get and pain radiating down the arm.  I didn't have health insurance, so I tried to ignore it, hoping it would go away. 


In March I awoke one morning around 4 am with absolutely no feeling in my right arm or hand.  It took hours for the feeling to come back and afterwards, the pain in my shoulder was awful.  I finally went to student health services.  X-rays were taken and a cyst was found on my humerus.  I was then scheduled to see an orthopedic surgeon in early April.  He said there was no way the symptoms were coming from the cyst so he referred me to a neurologist.  My appointment was 2 days before my nursing school graduation.  He diagnosed Thoracic Outlet Syndrome (something I had never heard of and could find very little information on) and scheduled EMGs.   The nerve studies were normal, so I started physical therapy the same week I started my first nursing job.


I was led to believe that PT would work wonderfully and that by the time the leaves changed colors in the fall, this would all be behind me.  Unfortunately, I progressively got worse and worse.  I was going to PT three times a week and working full-time.  In order to get through my shift at the hospital, I was taking 6-8 Aleve for an 8 hour shift!  I knew that wasn't good but I was desperate. I was struggling to do everything from changing IV fluid to opening medication.


I finally went back to the neurologist begging for help.  He sent me to a vascular surgeon who patronized me and made me feel like a fool.  I started crying and he patted me on the shoulder and said "now, now, do you know what I would do to be 26 again?"  I cried all the way home. 


At this point, the burning sensation in my right shoulder was so real that I would run to a mirror and rip my shirt off, convinced there was something on me.  I often said it felt like a hot iron was being held on me.  In my arm pit region, I had a pain that felt as if I were being jabbed by a piece of metal.  The numbness started lasting for days at a time and I was so clumsy with my hands that it was embarrassing.  Every now and again, I would have a good day. minimal to no pain and no symptoms. and then I would think I was crazy.  But then the next day, I would pay twice as much. 

My neurologist took me out of work for 2 weeks to see if the symptoms relieved any.  By day 12, I was feeling a little better but then it was right back to work.  My supervisor didn't believe anything was wrong and even said "you look perfectly fine to me" so I started receiving the worst assignments.   I came very close to dropping a patient and that was a wake up call.  I knew I was putting others at risk and my nursing license on the line.   That was Sept. 11, 2002.  I never worked another day at that hospital.


By this point, simple tasks such as brushing my hair and teeth were so difficult - the pain and numbness made little things a huge chore.  I drove a 5-speed car and changing the gears was excruciating.  I was fortunate to have friends who often helped however they could. 


I went back to the neurologist and explained my agony.  He sent me to the Cleveland Clinic.  I had such high hopes and was so excited!   I met a doctor there who never even touched me but told me I wasn't a candidate for surgery until I completed 1-2 years of extensive physical therapy, unless I developed a clot or aneurism.  He then sent me to a PT there so I could learn what I needed to be doing, because obviously my "PT in West Virginia didn't know what he was doing".    In 2 pages of clinical notes, the man never said anything about my complaints of pain, yet filled it full of things never discussed!  Again, I cried all the way home.


I finally found Erdogan Atasoy, MD at the Kleinert Kutz Hand Care Center in Louisville, KY.  I saw him for the first time on October 28, 2002.  He spent 6 long hours examining me.  I was in so much pain and so symptomatic by the time it was over I was exhausted.  It was so obvious that he knew what he was doing so I was able to appreciate the thoroughness.  He diagnosed bilateral thoracic outlet syndrome and severe myofascitis.  I was started on muscle relaxers and pain medication (for the first time offered a prescription for pain medication and not made to feel like a drug seeker) and a game plan for surgery was implemented.


I had been out of work for almost 2 months and my savings was depleted.  I had to move back home - giving up my apartment, my friends, my life - two hours away from where I had spent my adult life.  It was devastating - I felt like everything was being taken from me.  The depression hit hard around this point - making the TOS issues even worse. 


In March 2003 I had a right 1st rib resection and anterior & middle scalenectomies. After the surgery, Dr. Atasoy said my bones and muscles were very large and lean - almost overly developed.   I had the left side surgery in June 2003.  The entire surgery was 9 hours. twice as long as it was supposed to be.  My scalene muscles had overlapped embedding the nerve in-between and then growing together -- basically suffocating the nerve, artery and vein.  The rib resection also showed anatomical issues.  Dr. Atasoy described my muscles as appearing like those that would belong to a body builder because the muscle belly was overly pronounced and the bones were larger than they should be too.


In October 2003 I had a portion of my left elbow removed because the ulnar nerve was embedded into the funny bone (cubital tunnel syndrome).   The following spring I told Dr. Atasoy that I couldn't maintain a grip in my right hand and that my forearm often cramped.  Tests revealed pronator teres syndrome.  I had surgery for that in April 2004.  Surgery revealed the nerve wrapped around the muscle.  When the muscle was cut - the nerve "popped" and went into place! 


The same symptoms started in the left forearm and I had the pronator teres release on the left forearm done in July 2005.  I also had carpal tunnel surgery done at the same time.  A muscle in my hand had grown 2 inches farther than it should be -- down into the wrist region causing the carpal tunnel.


To date (July 2008) I have not had any more surgeries and pray they are all behind me.  I still have severe myofascitis and some scar tissue has developed especially on the left side.   I get marcaine and kenelog injections about twice a year on trigger points and I continue to take muscle relaxers daily.  Dr. Atasoy and his staff have become my angels on Earth.  I travel 6 hours to see him and although the trip isn't fun - I am treated with respect, kindness and COMPASSION. 


I feel fortunate that my situation is life altering and not life threatening.  I do have lifting and other restrictions and certain activities that I cannot do.  However, I have learned new ways of doing old things.  I won't say life is perfect - it is far from that - but by the grace of God I was blessed with family and friends who have supported me from day one and continue to help me any way they can.


With my lifting restrictions and the fact that some days I am shaky and uncoordinated, I will never be able to work in a hospital.  I now work as a school nurse and I have learned to pace myself and my tasks.  I still have a lot of symptoms when I am stressed, upset or with weather changes.  (Cold and damp are not my friends!) I use a heating pad each night in order to get my muscles to relax enough to be able to sleep. 


Life will never be the same and I am always hesitant to share my story with new people.  I recently was asked on a date. to go skiing!  I declined and told him I couldn't ski - so he said that was OK, we could go tubing instead!  I reluctantly told him that wasn't a possibility either and shared my story.  He understood - but I had to cringe at the irony.  Most people take activities like that for granted, yet I know that one good fall or any form of trauma to my upper body could be devastating - causing the problems all over again.  I am 32 years old and have seen more medical bills than most people twice my age.  Yet, I am living proof that there is life after TOS.  And, it gets better - the pain, the numbness, the depression. it all gets better.  You just have to live a "new normal". 

 Amanda, Shady Spring, WV


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