*Disclaimer: This writeup details my personal experience. This is not any kind of official medical advice. I am not a doctor. And if I were a doctor, I would be the kind that tells you you're crazy. And has nice little couches. With tissues.

Admit it, when you read this title your first thought was "What is Thoracic Outlet Syndrome?" (OK, a small percentage of you may have thought "Is that cat still in the trunk of my car?" but I'm not really targeting your group, so move along). Briefly, Thoracic Outlet Syndrome describes a compression of the nerves in the area of the brachial plexus (think collar bone) as they leave the spinal column and extend into the arms. This compression can be caused by genetic defect or localized trauma to the area, such as an injury resulting from a car wreck.

"OK, so your nerves are a little cramped, what is the big deal?"
Essentially, Thoracic Outlet Syndrome (referred to hereafter as TOS) primarily causes a reduction in function of the nervous system entering and leaving the arms. The severity of this effect is related to how extensive the damage is around the passageway through the collar bone area. If scar tissue is prevalent to a large degree, the results can be quite severe. Chronic pain, loss of function, and the myriad mental and social problems stemming from these symptoms are common in people experiencing a significant case of TOS.
"Well, my parents aren't carnies and I only take the train, so again, what is the big deal?"
TOS initially can be mistaken for carpal tunnel or tennis elbow, which are more common and more likely to affect everythingians. In this writeup, I'm going to explain how TOS has affected me and then I will discuss ways in which I have learned to live with it. Because many conditions cause chronic pain and loss of function, the strategies detailed here will hopefully be applicable to other situations. Also, this gives me a chance to finally put down on paper (electronic, mind you) the whirlwind of experience and emotion that has been my last 10 years.

Monkeylover's Story:


Part The First, in which our hero joins e2 - In 2000, I began my first professional job as a GIS Analyst. Fresh out of college, I was newly married, relatively well-paid (compared to my expenses, not my peers), debtless, and healthy. Life was better than good, it was perfect. This was a good time to be a young IT professional. Interesting things occurred daily in the wilds of the Internet, IRC provided tons of lulz, as the kids say, and best of all, I could afford a DSL connection. Because of these things, much of my time was spent on a computer at both work and home. Being young and invincible, I gave no thought to posture or prevention of repetitive stress injuries. And to be fair, few others did either, including my supervisors at work.

During this time, I discovered e2, and man did it hit the spot! I was needing some wisdoms bad, and hungry for a Butterfinger Mcflurry. Concurrently, I started playing Ultima

online, and between these two sites the amount of time I was spending on the Internet increased even more (my wife worked nights, for those who are wondering why a newlywed would be spending so much time on the computer).
Occasionally all of this click click clicking might make my wrist or arm feel a little sore, but taking a day off generally fixed things right away.

Part the Second, in which our hero goes under the knife - One day at work, in the face of a looming deadline and on the eve of a birthday weekend trip to Florida, I frantically click click clicked my way through the last hours of my project. At some point I started feeling a painful sensation in my arm. Being young and invincible, and also ready to get underway, I continued working at speed, turned my project in, and hit the road. En route, I commented to my wife that driving felt unpleasant, holding the steering wheel felt weird, and maybe I had overextended myself at work. However, that weekend my wife and brother took me to my first strip club experience, so I didn't give the discomfort any deeper thought.

Over the coming weeks, pain in my arm increased. I visited a general practitioner, he prescribed ibuprofen and rest. Months followed and the pain continued to get worse, while each day I became more stressed. I began seeing doctors, lots and lots of doctors. I received three of the electrical impulse tests (wow that sucked). I visited two general practitioners, two neurologists, and multiple physical and occupational therapists. In the parlance of our times, shit got bad. Various medications were tried on me, but since no one had a solid diagnosis, I felt like a little lab rat. One of the medications gave me nightmares so badly that I would wake up screaming and drenched in sweat.

Ultimately I resigned from my job. After two years, the pain I experienced each day prevented me from sleeping more than a couple of hours per night unless heavily medicated. At work I felt social pressure from my peers, because after all, nothing appeared wrong with me. My relationship with my wife had increasingly deteriorated from the constant stress of doctors visits and the financial burden imposed on us. Our quality time together plummeted; I was always in pain, tired, and worried. And worst of all, I had no answers for anyone. There was no way for me to adequately explain what was happening to me in a way that people could sympathize with and understand.

And then a lot of things happened. My wife and I divorced. A sports medicine doctor recommended I see a specialist at UAB Hospital. He speculated that my symptoms could possibly be TOS, but that it was so rare most doctors would not recognize it correctly. (Keep in mind that at that time repetitive stress injury itself was much less diagnosed than today). This specialist confirmed a diagnosis of TOS, and within a couple of weeks of my divorce I had surgery to relieve the thoracic outlet. Before my surgery, I completed my M.A. (this was started initially to help me find a job that did not require computer use). During my recovery from surgery, I obtained a teaching job. At this point, I had been experiencing TOS for over three years.

Part the Third, in which our hero drives his enemies before him, and hears the lamentations of their women - Unfortunately, the surgery was unsuccessful. My portion of the hospital bill was significant, and depleted the remaining savings that I had, as well as putting me several thousand dollars in debt. So I began my new job as a teacher several hundred miles from home, with approximately $17 to my name, a badly used car, and an apartment which only contained a mattress, television on milk crates, and about 400 books laying on the floor. Mentally, years of living in pain and rarely having a good night sleep had taken its toll. Unable to communicate my experience with chronic pain to my friends and family, I felt very much isolated and on my own.

Over time, the pain in my arms slowly diminished. Because my new job teaching only required occasional computer use, I was able to continue improving. This process occurred at a glacial speed, but occurred nonetheless. I actively started looking for accommodations and technologies that would allow me to work around the pain in my arms. Even better, my personal life recovered with the reduction in personal stress, I met someone awesome, remarried, and now I have a wonderful family. At the lowest point in this ordeal, I never believed I would be able to climb out of the hole to reach this point. But to do so, I have had to implement several strategies that allow me to cope with chronic pain associated with TOS.

Strategies for Managing Chronic Pain Associated with Thoracic Outlet Syndrome:


1. Isolate the activities that cause pain and find ways to work around them. At first, every activity seemed to hurt. Over time, I started keeping a journal that had a pictographic representation of myself. Each day I would mark what areas of my arms, hands, and shoulder hurt, and then I would detail my activities for the day. This allowed me to develop a record that was not only useful for taking to doctors appointments but also helped me to isolate patterns of activities that cause the most pain. Personally, the following activities proved to be the most harmful:

A. Typing: Absolutely not possible. Instant pain. Not happening.
Resolution: Voice Recognition Software. Realistically, it is almost impossible to find a job in today's world that does not require some amount of typing. Even the mechanics at the garage use a computer. And yet in less than one minute of typing, I would be experiencing so much pain that it would be difficult to sleep hours later. Eventually I came across a voice recognition software program. At first I did not use this very much, because it is an activity that can make one very self-conscious. As I grew more comfortable with it, though, it became more useful and I increased the library of recognized words through continuous use.

B. Using a mouse: Extreme Pain! This caused sharp pain to radiate up under my jawbone down to my fingertips.
Resolution: Pen Tablet And Arm Braces. On every computer that I use, I have replaced the mouse with a pen tablet. This allows me to push the included pen tablet mouse around to position a cursor, then use the voice recognition software to direct the computer to click or double-click as needed. Used together, I can control a computer without pressing a button (at least mostly). I wear the arm braces to maintain the same position of my hand and wrist relative to my arm. Generally, everything from the elbow down stays in the same place as I push the mouse around on the tablet.

C. Driving: Just as critical to modern day life, but equally debilitating to me.
Resolution: Arm Braces And Automatic Transmission. For years I drove a stick shift, and I loved it. But with the onset of TOS, not only did turning the steering wheel hurt, but shifting gears put a lot of strain on my arms. Since my surgery I have only driven automatics, and I always always always drive with arm braces. Initially finding a set of arm braces that comfortably kept my wrist in position proved difficult. When I finally did locate a pair (made by Med Spec), I continued to use them up to this day. I keep separate pairs at my desk at work, in my car, at my desk at home, and boxes of extras in the closet. I am faced with having to wear these for the rest of my life while using a computer or driving, so I try to stockpile them when I can.

D. Carrying my daughter: This one was the most depressing. After my daughter was born I realized that carrying her around for any length of time really caused problems for me.
Resolution: Typically I would just sit in the floor with her if it was feasible. But there are 1 million times where I just carried her and hurt. And who can blame me, each of you would do the same. One day when I am old and crotchety I will remind her of this and make her take me out for ice cream. I would take holding my daughter and hurting any day over not being able to carry her at all.

E. Sleeping: Prior to acquiring TOS, I slept on my side. Nowadays, if I wake up sleeping on my side, my arms will be numb and will hurt for hours.
Resolution: This one proved difficult to change. After years of conscious effort, I now go to sleep on my back and if I wake up during the night will automatically roll over to lay on my back if I am lying on my side. But I still sometimes wake up lying on my side, and I'm not sure there is much that can be done about it.

2. Keep a positive attitude. OK, that seems campy and glib, but it is hugely important. The bottom line is that if you have TOS there is a chance (when I had surgery, a 60% chance) that surgery will be ineffective or, without surgery, you will not greatly improve for many many years, and possibly not ever. Nerve damage takes a very long time to heal, in the cases when it can heal at all. It was so easy to get locked into a mindset that life had treated me very unfairly and that everyone else continued to live these full, interesting lives while mine had been totally circumscribed. It was hard to see (although now I am able to thankfully) that by being alive at all I was already incredibly lucky. At its worst, there was no way for me to see during my ordeal that I would eventually find ways to work around it and meet a beautiful girl and have a beautiful baby. The more positive attitude you can maintain, the better your chances of being successful in finding ways to live around the pain.

3. Stay Busy. In my experience, especially during the worst times, if I did not stay busy I constantly dwelt on how much I was hurting, or how badly I felt I had been treated by life, etc. This is not conducive to healing. As time passed, I tried to focus less on the things I could no longer do and instead started pouring my energy into things that I could still do and enjoy. This made a big difference in my quality of life, and indirectly in the quality of life of those around me, since it is easier to spend time with a friend who is generally pleasant than a friend who is constantly depressed.

So that's it. If you know someone who has been diagnosed with TOS, try to be patient. If you yourself have TOS or a similar problem which causes chronic pain, hang in there. It is tough at first and takes a little while to adapt, but things really do get better if you put your mind to it.

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