A day in my life with TOS, Thoracic Outlet Syndrome

By Robin, United States, February 27, 2014

It is 6:48 am.
My dog is at the edge of the bed, whining and doing her potty dance.
I roll to get up off my chiropractic mattress and realise I should not have slept on that pillow last night because now an ache travels down my neck into my back and all the way down my arm with just the lightest little throb.
My feet land on the floor and I reach back to rub my neck as I head toward the door to let the dog out.
A few attempts at turning my head slowly, left and then right, and back to the left, bending my arm and rotating at the shoulder. A systems check if you will. "Feeling pretty good this morning", I think to myself.
Mind you, this is compaired to the constant ear, neck, back, and arm throbbing I had before my first rib was surgically removed through my armpit two years ago because I'd been living with constant arm pain due to Thoracic Outlet Syndrome. Yes, compared to that I think I'm feeling pretty good this morning.
While the dog does her morning business outside I get the coffee started, half-caff...or decaf, depending on the morning. Too much caffiene would surely tweak my already strained nerves and tip off a cascade of effects that cannot be turned back once they begin.

I will be driving today, a good half-hour from home, so as I get myself around for the day I know I must wear my hair down. Putting it up would force my neck into a position while I'm driving that would cause my neck to cramp, nerves to pinch and arm to ache. So today I will brush it back and reconsider chopping it all off.

I apply deodorant, and cringe as I rub the stick over my rib-resected armpit, enduring the now familiar prickly numbness from nerves that did not grow back postop.
"Did I get it on?" I wonder. I have to actually watch myself smear it on to be sure.

Before I head out the door I wash down some pills, stuff my cell phone in one pocket and my little pocketbook and keys in the other pocket, and head out the door. Sigh. I miss being able to carry a purse and feel prepared for any emergency. It wasn't a tough choice though really, cute purse or throbbing arms? Enough said.

As I head down the driveway, I instinctively pull my seatbelt out and hold it away from me with one of my thumbs as I drive. The pressure of the belt against my neck and shoulder causes that pinchy pokey nerve pain that eventually escalates into throbbing constant aching- and that I cannot bear. So I compensate, and pray as I drive with my seatbelt sortof on that God will protect me and any police officers will be understanding. (Update: I have since received a letter from my doctor stating that I need to adjust my seat belt for medical reasons, and I also ordered a belt clip that holds it away from my neck.)

After my apointment I stop at the store. I've gotten used to parking far far away from the store, out where I can pull through so I don't have to wrench my neck around to look behind me to back out of a parking space. A couple seconds too long in that position and the pain in my arm coupled with the very real possibility of a blood clot in my non resected TOS arm prompts me to not care about having to walk a little further into the store.

I only need a few things from the store today, but one of them is milk. I know from experience that the weight of several pounds of milk hanging from my arm, pulling down on the cervical rib bones in my neck will cause spasms, possibly pinch off blood flow, which makes my hand a nice shade of blue. Carrying milk would definitely squish nerves and set off that darn chain reaction that does not stop once it starts up. Besides, blue doesn't match my outfit today -so I'll just grab a cart.
I run into a friend I have not seen in a while. She wants to hug me, and being the people pleaser I am, I oblige; even though my experience is that I am always just one too tight hug away from misery.
Later in the day I hop online to check a few things, propping the laptop up on pillows or books so I don't have to look down.
The day winds down and it's been a good one, productive, with lots of adjustments along the way to avoid flaring up. Awareness, as my physical therapist would remind me, I must always be aware of what my body is telling me. Why is that pinch in my neck there? Listen. Pay attention. I do a mental systems check. Is my posture off? I notice my head is turned slightly to the left as I'm watching tv.
I need to change where I sit so I am directly in front of it.
Always having to pay attention to these little things in order to avoid incapacitating pain is a skill one hones over time out of necessity. Why that throb in my arm, but only to the elbow this time? I notice my bra straps are a bit tight, so I push them out to the edge of my shoulders, away from the tender nerves and arteries that cannot take the pressure.
The dog is back. She is looking pittifully up at me with those sad eyes asking to go for a walk. I clip her leash onto my belt loop, and bend my arms up at the elbow as we walk to avoid any arm and hand throbbing my letting them hang down.

It's time for bed now. As I drift off to sleep, flat on my back without a pillow, I wonder about what tomorrow will bring?What adjustments will need to be made?
Whatever it brings, I'm just thankful I've gotten this far along the journey, even with TOS.(Thoracic Outlet Syndrome)

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