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Diagnosed

Living With Chronic Pain

Life at 20 changed when I was diagnosed with Thoracic outlet syndrome. Thoracic outlet syndrome is a rare disorder, a condition in which most patients complain about pain, numbness, tingling, and weakness in the arm. There are three types of thoracic outlet syndrome; neurogenic TOS, nerve compression; number two is when there is compression of the main vein and number three is compression of the artery and only 1 percent of the world suffers from this type. My body dealt with types one and three, having surgery on both sides of my body. My right cervical rib (extra rib) was removed in the summer of 2011 and my left cervical rib was removed in the spring of 2016. 

Finding out from your doctor that you were born with two complete extra ribs (cervical) was mind-blowing. I’ve never heard of anyone having extra ribs or being affected by them. But I also felt somewhat unique. My doctor in Chicago was a brilliant and outstanding man. Traveling to meet him in May of 2011, it felt surreal that I was traveling to Chicago to meet him because my disorder was so rare that no one in Indiana dealt with Thoracic outlet syndrome at the time. The first moment upon meeting him, my heart was racing. Honestly, I wasn’t sure if I was going to be okay or not. During the checkup and looking over all my files and MRI, he showed me my extra ribs and how my artery on the right side could be damaged from my extra rib. Checking my pulse on the right side, he could not find it. It was hard to find. He left the room and came back quickly, telling my parents and I that I would need to have vascular surgery. The extra rib was beginning to push down on my artery and could become a very serious problem in the future. He explained that many people have extra ribs and it will never affect them and people with these extra ribs will not know. Continuing, I’d find out that 1 percent of the world has issues with their extra ribs and that these people would have to have surgery. I was now that 1 percent. Thoracic outlet is most common in men/women who play sports, particularly baseball and softball. I played neither (ha-ha). I did play basketball competitively for over ten years and doing the same follow-through motion over and over again could be a reason. Other common causes of TOS include trauma from a car accident, job injury, or certain anatomical defects, such as having an extra rib or two like myself. I was in a minor car accident the year before my first surgery. 

Complex Regional Pain Syndrome

My complex regional pain is in my chest, the left side. My chest pain is the worst pain I deal with compared to my left arm and upper extremities. CRPS is a condition causing persistent nagging pain after an injury to a limb. It can be triggered by a surgery. My complex chest pain was triggered by an invasive thoracic outlet surgery. When the doctor removed my cervical rib (extra rib) and first left rib, my nerves were entangled around these two ribs. I am in a constant battle with strange sensations such as coldness, which sends sharp shooting pain into my chest. It almost feels like a heart attack at times. The average age is around 40 when diagnosed. I brought the average age down a bit.😰 I have a few exercises to get rid of the stiffness and a few chest rubbing techniques to help slow down the pain but I do not think I will ever get away from this pain syndrome.

TOS & my complex regional pain has been a very long journey of pain but also of learning how to cope and manage the pain. 

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