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.
Tracie has been suffering from dizziness, slow speech, forgetfulness, and more, for many months. She went to the University of New Mexico Neurosciences Center to see a neurologist on April 11, but they mistakenly scheduled her appointment with a neurosurgeon, not a neurologist. (See Installment #1 below.)
May 16, 2016, 11 a.m., UNM Neurosciences Center, Albuquerque:
It’s like Casablanca: we wait, and wait, and wait. After two hours, I cruise the corridors (if you don’t get lost, you are in the top percentile for navigational skills), until I find a woman who agrees to find someone who will tell us if Tracie’s been forgotten. Fifty minutes later, the doctor walks into the exam room.
The first victory: Dr. Olafsen is a neurologist, the specialist Tracie has hoped to see for months. Will he be another specialist like the many she’s already seen, whom she described as “mean, and rude, and non-caring?”
Dr. Olafsen introduces himself, and greets Tracie, Tracie’s father, and me. He says he is sorry we’ve had so long a wait. Good start. He asks Tracie to tell him her concerns.
Five weeks ago Tracie didn’t take any ibuprofen and felt terrible when the doctor came in. Now she has taken one ibuprofen, and feels well enough to give her history and to explain her symptoms. Slurred speech, as if she were drunk. Confusion. Stumbling as if she were drunk. A fall. Forgetting things. Not thinking clearly. Dizziness.
Dr. Olafsen asks her, “What sort of dizzy – round and round, spinning?” He moves his hands in a circle. “Or side to side, like a rocking boat?” He makes a rocking motion.
The neurologist is listening to Tracie! He’s asking questions based on what she’s said. He asks her many questions, and he listens, and listens, and listens.
Tracie says she has been able to work from her bed, lying down. The doctor asks her about what happens when she sits up, and is interested that she feels better when she is horizontal than when she is standing.
He thinks there are two likely explanations for Tracie’s troubles:
1. A meningeal infection that’s starting to get better (because Tracie’s symptoms are less severe than a few weeks ago).
2. A slow leak of spinal fluid, a leak that’s slowing down (because her symptoms are less severe). I wonder, does he suspect that her feeling better when she’s horizontal indicate a leak?
He decides to order a lumbar puncture, an LP (he doesn’t use the scarier term “spinal tap,” but it’s the same thing). And he explains why he wants the LP: it will tell him if either of his two likely explanations is right – it will detect any infection, and it will assess pressure, letting him know if there is a leak.
I ask him, if Tracie has a slow leak of spinal fluid, what then? Dr. Olafsen says there are ways to treat that, but he doesn’t elaborate. He says goodbye.
Next appointment: Lumbar puncture. I will drive Tracie to Albuquerque on July 11. For this May appointment, aside from driving to Albuquerque and making sure we haven’t been forgotten, I haven’t done anything helpful. But Tracie is happy when I confirm her optimism at finally seeing a doctor who listens to her and who has a plan for the next step.
Who knows if I’ll be needed on July 11? I’ll be there, for moral support, and just in case.
I’m writing this in early July, a week before Tracie’s next appointment. I am telling this story in installments, over a space of time. I know what’s happened so far, but I don’t know what happens next.
This starts with a letter from a mutual friend on the East coast:
Tracie has been very sick for the past several months and at one point was diagnosed with a brain tumor. . . . she started to feel poorly (dizzy, fatigued, slow speech, forgetfulness, and more). For the past 6 months or so she has been shunted from one incompetent-sounding doctor to the next with still no proper diagnosis or plan of treatment! . . . . you could be a temporary advocate.
In my book, Climbing Back: A Family’s Journey through Brain Injury, I write “there should always be two people with a patient – one for company and love, and a second as the patient’s advocate.” Since then, readers have turned to me for advice. This is my first experience as an advocate for someone not in my family.
Tracie sends me her medical history. Google answers most of my questions –Tracie’s brain tumor is described as a “small meningioma” by her doctors. I learn from Google that 92% of meningiomas are benign. When I give Tracie this reassuring bit of information, she says that no one has told her this before.
April 11, 2016: I leave home before 6:30 to meet Tracie and her father at a parking lot. One minute late, I panic that I’ve missed them and they have gone on without me. They arrive ten minutes later, unconcerned. We’ve allowed plenty of time.
8:30, UNM Neurosciences Center, Albuquerque: Tracie is here to see a neurologist. When the doctor finally arrives, he’s a neurosurgeon. She has already seen a neurosurgeon; he will do another scan in six months, to see if the meningioma has grown. Now she needs to see a neurologist to figure out why she’s doing so poorly.
“You’ll need a referral to a neurologist,” the surgeon says.
“I’ve already waited months to come here,” Tracie says.
“I’m a neurosurgeon, not a neurologist. I can’t help you if you don’t need surgery. You need your doctor to refer you to a neurologist.”
Wanting to be unmedicated when she sees a neurologist. Tracie hasn’t taken the four ibuprofen that help her feel better. “I just want to know if I’m dying,” she says.
We’ve gotten up before dawn and come all the way to Albuquerque, and if I keep quiet, this trip will have been pointless. Tracie is close to tears. It is time for me to be her advocate.
I say, “You’re a doctor. Can you write the referral?”
It takes half an hour for a technician to enter the neurosurgeon’s referral into the computer system. Computer troubles.
“Now we can go down the hall and make the appointment with a neurologist,” I say.
“Oh no,” the technician says. “The referral will be at the bottom of a pile. They won’t see it for a few days. Call at the end of the week.”
I can see that Tracie is ready to give up and go home. It is my cue.
I say, “Can you print it out so we can hand carry it?”
She has to ask her supervisor.
Half an hour later, referral in hand, we are at the Neurology Department, just down the hall. I push for an appointment as soon as possible, even for this afternoon if there’s a cancellation. We've already come 60 miles and been here for hours. The receptionist bristles when I emphasize that Tracie doesn’t want a repeat of the previous mistake – being scheduled to see a neurosurgeon rather than a neurologist.
Tracie gets an appointment for May 16, five weeks later.
Three days later, worried that my assertiveness prompted the receptionist’s hostility, I email my concerns to Tracie. She responds:
I really do believe that she suddenly realized that I was the one that she had been talking to on the phone, and that she had messed up three times with me at that point. And that is why she suddenly became so rude and aggressive. What a way to react, when she had messed up so bad! Even when she left my paperwork sitting there for 10 weeks and did nothing with it, I was very kind and understanding towards her. . . .
I offered her much more kindness than she did us! And still, she was about to make me wait four more months! Two more months than what she originally told me the waiting time was currently. Again, I reiterate: "screw her."
Ah, that felt good. Very therapeutic.
That’s Tracie – kind and understanding, polite to those who mistreat her, and aware of how the system works against someone who is kind, understanding, and polite. She needs someone who’s not as vulnerable as she is, someone who will push back when pushing back is needed. She needs an advocate.
Next Installment: May 16, 2016, 11 a.m., UNM Neurosciences Center
What happens when you write a book like mine? You keep finding people who’ve had brain injury. There’s Linda, in the lighting aisle of the home improvement store, who tells me a dump truck hit her years ago. She couldn’t count to 63. Why 63? I ask. She says she was knitting, needed to count 63 stitches, and realized she couldn’t do that. She almost lost her marriage before she realized what was wrong and got help.
You meet others who’ve been stonewalled by doctors. They need help getting the help they need.
You learn that everybody has a story. If not brain injury, then a cancer that metastasized to the brain. Or another medical disaster, because everybody has a body.
Andrew called me. Susan, his partner, was in the hospital. She’d been in great pain for over a day, and no one was telling them anything. The doctors hadn’t talked with Susan or with him.
Find out when the doctors come by, I said, and be there fifteen minutes before that, so you’re sure to catch them. You won’t have much time, so have your questions ready.
Susan doesn’t want to bother the doctors, Andrew said, She doesn’t want to be rude.
That’s your job, I said. Don’t worry about seeming rude. You can be polite and firm – but you must make them talk with you.
I asked, Does she have a doctor she sees for annual checkups? Have her doctor call and talk to the doctors at the hospital – doctors pay attention to other doctors. Have her doctor tell them to talk to you.
Two days later, they were talking with the doctors regularly. A day later, Andrew told them Susan’s pain was unbearable. They scheduled her for surgery that afternoon. She was able to go home a few days after that. Now she’s well.
Andrew had to learn how best to advocate for Susan. Here’s what he’d tell you:
More advice: If you don’t yet have a doctor, get one now. If you ever need that help, you’ll be ready.
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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