- Down the Medical Rabbit Hole
Editors’ Note: This woman’s child was treated for an astrocytoma at 8–years–old. The surgery included tumor resection and placement of a ventricular peritoneal shunt, which manages the flow, drainage and pressure of cerebral spinal fluid (CSF ) throughout the brain and spinal column.
Am I aliveWhat’s this pain I feelAching insideMaking me kneelDown to the groundSubmissiveLike I’ve been sentTo Hell–Anonymous
I am making a time capsule of words. If I don’t write these words now, how will I remember? It is for her. She will need these words to know who she is.
They took her at the lowest point, when she was barfing and admitting she needed to be in the emergency room (ER). And they stripped her of the ability to use her words to defend herself.
“There’s really no reason for you to be here. The x–ray of your shunt tubing looks fine. The CT of your head looks fine. You should think about going home.” I start to speak, but she is speaking so I wait to hear what she will say.
“I was worried since my side hurts so bad that maybe it was my appendix and I didn’t want it to burst and then have the infection go up my shunt, I know someone that that happened to, and then my head was exploding and I threw–up.”
“That’s when we have to come in to the ER “ I say. “We’ve done this before. We wait until the last possible moment before coming. You’ve seen us here for almost 12 hours now, but we waited more than 24 hours before coming and she was just like this the whole time.”
“One of the only things we can see that might be wrong is that we think she might be constipated.”
“I try to stay on top of it, ”My 20-year-old says. “I’ve been taking more pain killers lately because my head is always killing me and I push myself to make it to class. But I take stuff to make it easier for me so I don’t get constipated. Last Wednesday during class my head was exploding and I had to vomit. I don’t think my shunt is broken. But . . .”
I interrupt, which is my job, because they are not hearing her, still she gives me hated looks, “She spends two days in bed laying basically flat so she can spend one day or even a few hours vertical the next day. This has been progressing for a while. Last May she had surgery for a CSF leak in her spine. But the headaches are different this time.”
“We really think you should consider going home, the tests we’ve done look good.”
This is the part that always happens, the part where I say you go into the twilight zone or down Alice’s rabbit hole. In May I had to demand that she have the right to sit up, pain free in the hospital for two hours before leaving. And that is how they admitted her, Mother wants her to sit upright.
Here we are again 15 days before Christmas back in the ER—they, meaning the white coats, disbelieving us.
She broke then, like a piece of a falling statue, an arm or a leg or part of a shoulder busting off. “I can’t go on like this, my head is exploding and I push myself so hard just to walk across campus [End Page 18] and when I’m sitting in class I know I shouldn’t be there, it’s just so hard. I had a surgery in April last year to replace my shunt and I never really bounced back, and then they found the cyst in my back and the leak and after that surgery I just couldn’t get any energy and my head still hurt.”
They don’t know that she never tells anyone any of this.
“I know you don’t see anything on her scans,” I say. They always look fine...