So little is known about Thoracic Outlet Syndrome (TOS) that when I tell someone I have it, I find myself launching into a long-winded, clinical monologue about causes, and symptoms, and treatment, and even I get bored. I was a nurse for 15 years, and read medical records for a living, before I heard of it for the first time, when my doctor suggested it might be the cause of my unrelenting arm pain and the nocturnal numbness and tingling in my hands. TOS is so uncommon, most doctors have not heard of it. It's also a diagnosis steeped in controversy, so when the doctors have heard of it they may or may not believe it exists. Try explaining this to your spouse, your family, friends, employer, and coworkers. "I'm in agony because I have this medical problem that may or may not exist, which you've probably never heard of, and I need long-term and expensive treatment that may not help much, and, guess what? I probably won't be able to work anymore." Yeah, this goes over real big.
Shock and awe are just two of the emotions I've experienced over the last five years of living with TOS. I'm in shock, because I can't believe this has happened to me. And I am in awe, because it has taken so much from me. TOS changes your life. It changes the way you see yourself, the way you do things, your hopes and dreams for the future, your day-to-day life. I deal with it every minute of every day, managing symptoms, managing insurance benefits, managing how I make a living after I was forced to give up a good job with great benefits. There are good days, and sometimes there are only good hours. I take each as it comes, plan for the best, but prepare for the worst. It's all about respecting my limitations, knowing when I can most likely spend time on my computer without causing a flare-up of symptoms, or knowing when to spend the day quietly reading and watching TV while huddled with a heating pad and some pain medication on board. I count my blessings. I have a husband who's my rock, the best 16 year-old daughter around, a great family, good friends, a lovely home, and a part-time job I enjoy. Life is good. My faith in God has been renewed these last years, when I don't know what I'll be doing tomorrow, but I do know that God has something good planned for me.
Living with TOS is not unlike living with any other life-changing medical problem. You make concessions, you rewrite your life plan, you try to come to peace with the new you. It is easy to lose hope, to wallow in the misery, to give up. But even if I have not yet been fixed, and may not ever be fixed, I refuse to let the occasional shocks wear me down, and I intend to enjoy my awesome life.