Thoracic outlet syndrome is complicated. It can be caused by any number of things, from trauma (like a car accident or fall) to genetic predisposition to, as is my case, a subtle accumulation of overuse injuries that led to a cascade of malfunction in the structures of my torso, and later, all the way down my body.

One of the tricky things about TOS is the referred pain- burning, shocking, aching, tingling sensations that are felt one place, but are actually manifestations of problems somewhere else. To make it even more complicated, when a muscle is held with too much tension or becomes overused, the connected structures (other muscles, tendons, etc) take over the load, regardless of their ability to actually do so. When they inevitably become too stressed with the workload, their surrounding structures have to pick up the slack. Every structure in the body is related. An issue in your shoulder can become knee pain given enough time.


So, for instance, my latest physician had a suspicion that the pain in my arm and through the palm of my hand was actually caused by my scalenes, the muscles along the side of the neck whose primary responsibility is to hold the head up. Folks who use their arms a lot have a tendency to shrug a bit, causing the scalenes to tense and shorten to compensate for the other muscles who are working overtime to hold the shoulders up.  This can lead to a sore back and neck, headaches, and lots of other chronic pain issues.


When Dr. Brown palpated the side of my neck, it sent the most satanic feelings throughout my upper extremities, causing me to, all at once, flush bright red, see stars, feel nauseated, and cry uncontrollably. So last week, we did a diagnostic test to see if numbing two of the three scalenes (the anterior and medius) with lidocaine would affect the strength and level of pain in my arm. If it worked, we would take them out of commission more permanently with Botox a few weeks later.

For someone with tattoos, I really should be more okay with needles than I am. I imagined the procedure would involve a small needle, like the kind for the flu shot, sitting in the doctor’s office. Heck, I probably wouldn’t even see it!

Nope. Because the neck is rich with all kinds of structures you don’t want to go indiscriminately stabbing (jugular, carotid, nerve bundles aplenty), it had to be done under ultrasound in the OR, with several people saying things like “are you sure that’s it?” and “you don’t want to go too far there and hit the nerve ha ha” hovering around. And because of the placement of the ultrasound, the damned needle had to come from the other side of my body, across my face, and through my neck, just under the jaw, and down. The illustration may be poor, but the scale is accurate. I held it together okay, balling my hands up at my sides, even joking with Doctor Javelin as he did his work. It was actually nearly painless, but uncomfortable and unnerving.




P asked me how it was as I walked out to the car, and it was only then that the giant hot tears rolled down my face.

It was so scary, I whispered as I hid my face.

There’s such an emotional component to all of this. It’s not just relief from chronic pain I’m after. I’m hoping I might be able to play the cello some more, to keep this thing as part of my life, as the only constant I’ve been able to rely on to bring me good things and a feeling of purpose. The procedure was scary, but I think the fear is of something larger, something that looms.

On the way home, I noticed that the red-hot burning sensation in my left palm had gone away, as had much of the pain on the underside of my arm. I also had a little more feeling across the top of the forearm, which I hadn’t even realized had dissipated. Within 20 minutes, the pain had moved to my upper back: the pain was regressing. When my neck relaxed, the burden fell on my scapula and traps. So after the scalene Botox, those muscle groups are next, until things open up and can be retrained to do only the jobs they’re meant to do. After over 20 years more or less bound to each other, I suspect it will be a challenge to get them to behave independently, but that’s a fight I am more than ready to take on. 🙂

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5 Responses

  1. Lady, this sounds so completely intense and terrifying. Thank you for sharing your story. I hope you are able to get all the botox treatment you need with your new adventures in wine. <3

  2. Hi Emily I was having chronic pain for years all over my right side of the body would go from my neck my shoulder sometimes my ankle sometimes my knee sometimes my glute. Numbness in my arm can’t grip anything. was diagnosed with tos last year and had operation last month they removed my rib but I feel exactly the same. It’s really hard the impact it has on your body then also emotionally. I was wondering if you had any tips for me coping with it

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