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TOS - Thoracic Outlet Syndrome or The Only Snag?

When I was about 14 years old, I was diagnosed with Thoracic Outlet Syndrome (TOS), a condition wherein excessive pressure is placed on a bundle of nerves that pass into the arm from the neck causing pain and weakness in the arm.

I was a fast pitch softball pitcher and first noticed symptoms of TOS after pitching at an all day tournament. My arm swelled to the point that I could not bend my wrist, and although it's my favorite color, it turned a very unpleasant shade of purple.

My parents took me to a specialist at Johns Hopkins Hospital, but little was known about TOS or its treatment at the time. They simply told me to remedy the situation by quitting sports. I played softball for another year after that, relinquishing the position of pitcher and taking on second base so I wouldn't have as much strain on my arm, but eventually I gave up softball all together.

Three years ago, my younger sister found she had the same problem while playing softball in high school. Unfortunately, having seen that I had to give up softball, she didn't vocalize that she was having pain, and ended up in the hospital with blood clots.

Knowing more about TOS now than they did over ten years ago, and taking into account the severity of her situation, the doctors recommended surgery to remove the top rib on both her left and right sides to reduce the obstruction of blood flow. She spent quite some time in the hospital first to eliminate the blood clots, then for her surgery. She was restricted from certain activities after her surgery, softball included. She has since recovered; she has two less bones and is all the more cheerful for it. For every ounce of bone she lost, she gained an ounce of sunshine and inspiration.

When my sister was diagnosed, I went back to Hopkins and had a sonogram of my right shoulder to revisit my own TOS. They found I still had restricted blood flow, but not to the extent of my sister's prior to her surgery. The doctor recommended Physical Therapy and wrote me a script.

I did physical therapy for about three months to build up my upper body strength and regain some range of motion in my arm. I am always playing it safe cautious in my workouts so as not to agitate the problem.

I have not had any pain or difficulty with it since my physical therapy... until today.

I was so excited for today's WOD (Shoulder Press, Push Press, Press Jerk),  I didn't even begin to consider whether or not my shoulder was capable. The thought never even crossed my mind until my trainer pointed out that my left arm was carrying most of the weight and I was not locking my right arm.

The little Kelly I used to be would have made excuses and would have quit right then and there. I would have cited pain in my shoulder and headed for the car. Somewhere along the way, whether watching my sister go through surgery for the same condition that plagued me, whether through pushing myself to run further than I ever thought possible, pushing myself passed all reasonable exhaustion in CrossFit, or if it was just a natural progression, I can't say, but somewhere I grew up.

I put on my big girl panties and I got mad. I got mad at my shoulder for having held me back from pursuing my favorite sport in college. I got mad at the doctors for not knowing how to help me sooner. I got mad at myself for not pushing to do more sooner. And I pushed. And better still, I failed.

That's right, I failed. And I'm proud of it.

I maxed out at 58 pounds on the press, 78 pounds on the push press, and 88 pounds on the push jerk. I failed at 63 pounds on the press,  88 pounds on the push press, and 93 pounds on the push jerk.

So why am I so proud that I failed? Because it means I tried.

I cannot know what my limits are without pushing them. Sometimes that means I have to fail. But I cannot tell you how good it felt to throw down that 93 pound bar knowing that I had given it all I have got. After all these years of being too afraid to push myself, I have finally accepted myself for who I am and have become comfortable with where I am, and comfortable with pushing myself further. And I'm going to keep at it.

This is the sexy face my husband gets to come home to everyday.
Isn't he a lucky guy?

Comments

  1. Haha! Your faces are cuter than mine while working out! never heard of this condition before but glad PT helped you!

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  2. Thanks! It's not very well known or common, but oddly enough, while my sister was in the hospital, there were another set of sisters her age down the hall having the same surgery.

    I've definitely faced a mental barrier and fear in pushing myself, so I'm glad to have been able to overcome that yesterday.

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  3. I'm sorry to hear you have TOS, but in a strange way I'm glad that there's someone else out there blogging about it! I was diagnosed last year but it took about 6 months. I'm slowly getting back to a semi-normal life but I don't think I'll ever be able to lift weights- I still can't even use a purse without pain!

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  4. Allison, what kind of treatment did you have? I used to have almost constant pain before I started working with the physical therapist. It continued until I started lifting weights and I haven't looked back! It's been nearly a year that I've been CrossFitting and I'm pain free these days. It was certainly a long journey and I feel like I missed out on so much because of TOS. It is very reassuring to know that the medical field has advanced so much within the last ten years and there is help. My sister had three pulmonary embolisms and a double rib resection (second rib resection just over a year ago) and she was in the gym with me at Thanksgiving.

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  6. I have been diagnosed with TOS myself after I broke my collarbone and the thing is that I'm a weight lifter too. I've been looking everywhere for someone who lifts with the same problem. When I went to 2 different Dr.'s they told me that I need to lose muscle mass and not to add anymore. When I do lift my arm turns blue. I also noticed bumps in my veins as well. Your saying your doing Crossfit so that gives me a lot of hope. I can't go the rest of my life not lifting. Do you have any flare ups or lifting light seems to be it for us now?

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  7. Dean, I think our situations are slightly different, but I don't want to discourage you from continuing with weight lifting, because I have never listened when someone has told me I cannot do something I love. My TOS was somewhat of a birth defect. I was born with it, and rather than losing mass, I had to gain mass to correct it. Through physical therapy and continued training, I no longer see any signs of my TOS. I recently did a one rep max clean and jerk of 120 lbs which was a huge PR for me, and not something I consider light lifting at all (though for you it may be). My sister, on the other hand, had to have a double rib resection to remove the problem. She suffered blood clots and a pulmonary embolism as a result of not listening to her doctor and continuing to weight train and use it through the pain. If you are still having troubles with your arm and are noticing bumps in your veins, I highly encourage you to see your doctor immediately. I would discuss with them your options which do not involve giving up weight lifting. If your current doctor says there are not other options, seek a second opinion. Find the path that is best for you and don't give up until you find someone who will work with you. There is no reason to settle in this life.

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  8. I just shared your blog with my friend who was just recently diagnosed with TOS. She too, just shared her story on her blog and letting it be know that you can move forward and find what works best for you. If you care, you share: http://leanneflask.com/posts/using-music-to-relax-with-thoracic-outlet-syndrome/

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  9. The Only Snag...I like it.
    As a fellow TOSer, I am glad to see your blogging about dealing with TOS.
    Not many people have heard of what we have to deal with, so every little bit of exposure helps.
    Wishing you pain free days,
    ~Robin
    www.rtosjourney.blogspot.com

    p.s. may I link to your blog on my own? Thanks!

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  10. I am a sign language interpreter a a CFer, and was just diagnosed with bilateral TOS compressing arteries, veins, and nerves. I'm not bad enough to require surgery yet, but your story gives me hope that I can continue to lift!

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    2. I am glad that my story continues to reach and encourage people. This was written over three years ago and I am still going strong, now with a son of my own that I hope to encourage and inspire.

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