Naming things has power, and I like to give my enemies names.
For years now, I have asked my veritable fleet of doctors why I have ham hands. (That’s the technical term, of course.)
Ham hands are what my hands became after the first car accident. I wielded objects like two ham hocks were strapped to my wrists instead of appendages. Occasionally, I’d drop things. Writing with a pen or pencil hurt and ended up being too difficult; I was given a laptop during school exams for this reason.
(Like any suffering writer, longhand journals were my thing. I’d planned for a Belle library with bookshelves all filled with identical journals, but then two things happened: A) I hit puberty, so my writing became angsty and insufferable, and B) people kept giving me journals as gifts. Eventually, all of those journals will burn. But that’s beside the point.)
Anyway, so ham hands. There was enough nerve damage in my cervical spine that my hands were constantly irritated after the first accident. That’s acceptable. I could live with that. It got worse after the second accident, but still, it was livable.
Whatever has been happening over the past year has been unacceptable. It started in late August and continues to slide ever downward, pulling my increasingly numb shoulders forward, compressing the web of nerves near my pectoral minor. My forearms ache constantly. My hands are living bruises that pulse with pain.
“Are your shoulders always like that?” my physical therapist asked. She reached out to lower both of my shoulders, which were hiked up toward my ears. They inched right back up. My trapezius muscles are so tense that the muscles are shortened.
Physical therapy did nothing for the pain, though it increased my range of motion and strength. I got to play with a laser strapped to my head like a recovering concussion victim.
Then the leading TOS specialist in the country gave me the following diagnosis: “It is more likely than not that you have thoracic outlet syndrome. It is more likely than not that surgery would benefit you. I can’t say for certain whether you have it, but your tests certainly indicate TOS.”
There are two surgeries: one, the smaller of the two, is the removal of the pectoral minor muscle to decompress space. The other is a first rib resection.
TOS is a nebulous diagnosis of exclusion. I get that. I don’t like that the surgery is still the same as it was in 1975. A friend told me how he discovered his own TOS: when he was working on a bomb for a defense contractor. He looked down and saw that his left arm was swollen and blue. They removed his first rib, which he said worked. I’m still skeptical.
Being told that a diagnosis is “more likely than not” is absolutely infuriating. The consult ended with an understanding that this could be TOS. It might also just be increased nerve damage in my spinal cord, in which case there is absolutely nothing to be done. There are no tests in existence to differentiate the two.
You see the trouble, though. I want to fight this. To fight this, I must know what it is. I want to say to this nebulous pain, “Okay, TOS. I’m going to fight you, and I’m going to fix you, and I’m going to beat you.”
How do you fight when you aren’t sure what the problem is?