Tracie's Story, Installment #3
Tracie’s dizziness, slow speech, forgetfulness, and headache have continued for months. When she went to the University of New Mexico Neurosciences Center in April, they had mistakenly scheduled her to see a neurosurgeon, not a neurologist. Five weeks later a neurologist ordered a Lumbar Puncture (or LP or Spinal Tap), to help discover the cause of Tracie’s troubles. [See Installments #1 and #2, below.]
July 11, 2016, 10 a.m., UNM Neurosciences Center, Albuquerque:
After having waited almost three hours for the neurologist in May, I had asked what wait Tracie might expect when she came for the lumbar puncture. The scheduler said it wasn’t like waiting to see a neurologist – Tracie, she assured us, would be called for the LP at the scheduled time.
We arrived twenty minutes early, at 9:40. They didn’t call Tracie until after 11:30. I was not allowed to go with her to the room where the “sterile procedure” would take place. An hour later, Tracie called on her cell phone. She said there had been a “mix-up” and the doctor had “gone home.” The lumbar puncture would not be done.
Since the LP was off, I imagined that any strict protocols for sterile procedures no longer applied. I asked if I could I go in to be with Tracie. “Do you have her power of attorney?” the receptionist asked. No, I didn’t.
I could do nothing to help.
With Tracie’s permission, here, in her own words, is what went on in the room I could not enter:
I was not admitted into a room until 11:30, and since this was supposed to be where the spinal tap was to take place, I went alone. About 20 minutes later, an assistant came in, and apologized, telling me that there was a mix-up and the doctor who was to conduct the spinal tap had "gone home" . . . . I laughed and said, "really. You've got to be kidding!" but she quickly stated that another doctor would be coming in to talk to me . . . .
[The doctor who came in said,] "Well, I can re-schedule the tap, but I want to talk to you about that. I've looked over your chart, and I don't think that this is a case of meningitis. If it were a brain infection you would either be [over it by now or] dead at this point." . . . . He thinks that we are looking at a form of migraine . . . .
We did a hypoventilation and a hyperventilation test . . . . The hypoventilation test required me to breathe out and hold my breath a number of times. Then the hyperventilation test required me to breathe hard and deep for 10 breaths. He asked me which one was worse, and I really didn't know.
[The doctor left the room and told the nurse to repeat the tests.] The hypoventilation brought on stronger headaches and dizziness. When the doctor came in, I did it once again, and then he pushed on the base of my neck - first on the right side, with no real differences, and then on the left side. When he pushed on the left side, I got extremely dizzy, with slurred speech, and stronger headache. It took a while to subside.
His recommendation was, right now, some shots which were a mixture of steroids and a numbing medication . . . . He explained that it would be painful, but it would let us know right away if migraines were the cause. I liked that it would give us a quick answer, so I agreed.
Oh, my gosh, that was wicked. . . . [It was] like when you get your teeth pulled - the shot goes in, and then they move it around and shoot a little of the medicine in at a time. About three different places on each side of the base of my skull, one syringe for each side . . . . the pain was pretty bad the first shot in, and the sound of the "crunching" as the liquid pushed through the fibers in my neck was freaky-weird. Each time he was done, the doctor had to 'push' hard on my skull - one hand on the puncture area, and one hand on my forehead, in order to make sure that I would not bleed out. That hurt.
Once it was done, the doctor explained that I would be dizzy from the pressure of pushing on my head afterward, and he was right. I felt pretty discombobulated afterward, and just wanted to get the hell outa there. But the headache was completely gone! And so I have directions to 1) follow up with my primary care physician to check on my thyroid again - blood tests - but I don't know if he meant to include another ultrasound; 2)pick up my medication and start taking it once every evening before bed; 3)monitor my blood pressure and heart rate twice a day, and 4) call [the nurse] next Monday, if not before, to let them know how things are going.
Two hours after she had been taken for the lumbar puncture, Tracie strode into the waiting room and said, “Let’s get out of here.”
So, once again: waiting, not seeing the doctor we expected, and no certainty as to what is going on. Tracie, ever generous (she thought it “humane” that a homeless man, late for his appointment after the police had wakened, handcuffed, interrogated, and fined him for criminal trespass, should be treated first), doesn’t get the LP, hears a new diagnosis proposed, and has an amazingly painful procedure.
Nine days later, it’s not clear if things are better. Tracie’s in limbo. She will have a follow-up appointment. We don't know what else.
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Elise Rosenhaupt, author of the memoir Climbing Back, writes about her work as a patient's advocate and other experiences that cross her plate.
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