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Tracie's Story, Installment #2

7/8/2016

2 Comments

 
 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. 
2 Comments
Philip
7/8/2016 09:22:47 pm

Thank goodness Tracie has you , Elise, to support her (physically, logistically and emotionally). The long delays and miscommunication remind me of the alternative simple and powerful model of the Mayo Clinics--get all the docs together so they can talk to one another. Get five months of appointments in three days. Shocking that even with the docs under one roof at UNMH, they sound like they are miles apart. This points up the need for a clearheaded and assertive advocate for patients--the hard lesson you and your family learned and you've illuminated. Thank you so much, Elise!

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doritha palmer
7/14/2016 10:37:01 am

sounds like quite a mission Elise... can't wait for the next installment.
Glad that you are able to help Tracie in this way You ROCK! Dabby

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    Author

    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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Copyright © 2015 Elise Rosenhaupt
  • HOME
  • Blog
  • AUTHOR
  • EXCERPTS
    • FOREWORD
    • PAGES 1 - 10
    • PAGES 38-40
    • PAGES 87-88
    • PAGES 96-99
    • PAGES 204-205
  • REVIEWS, etc.
  • THERAPISTS' NOTES
  • BUY it!
  • CONTACT