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Dec 15, 2016 · Diagnosis and Treatment of Chiari Malformation Spurs Nikki Prins to Reach Out to Others

Best of luck with her surgery, I will pray for your daughter. This journey sucks for such young people!!! We are currently using Essentia and Dr. Christenson. He does not seem to worried about the Chiari Malformation. He is looking more at the fluid in her head, which no one has told us about. So she is luckily enough to get the spinal tap (to measure the pressure), an appointment with opthamalogy to make sure there is no lasting damage to her vision and another MRI with contrast to show the veins. Is this normal protocol for this? Have all you you gone on this same path?

The dr. told me her Chiari isn’t that bad and most of the time surgery causes more complications than it solves. I can understand that based on what I’ve read, but I don’t know if he is an expert on the condition. My plan is once this is all completed to have our regular dr. send all results to Mayo and make sure we are on the right path.

Dec 12, 2016 · Diagnosis and Treatment of Chiari Malformation Spurs Nikki Prins to Reach Out to Others

My daughter is 17 and a senior in high school. She has suffered from headaches ever since she was little, but nothing compared to what she started suffering in October of this year. She was tired all the time (she is a night owl), so I knew something wasn’t right. We went to the clinic and had lab work done, nothing odd showed up. In the middle of November, she experienced severe upper neck and shoulder pain, a nasty headache, blurred and double vision, dizziness upon standing, vomiting and ringing in her ear. I was worried about meningitis. She missed 2 weeks of school. We had plenty of visits to the chiropractor, 2 trips to the ER, a trip to ENT. The second trip to ER did the CT scan and discovered the Chiari Malformation. The dr. Did not seemed too concerned. We scheduled a MRI. The day before we went to eye dr., he dilated her eyes and told us it was good we had the scan the next day because there was swelling and it was pushing on her optic nerve…called papilledum. Fortunately, the MRI only showed Chiari Malformation and no tumors. The appointment with Neurology was moved up an entire month and we go tomorrow. I am hoping they will do more than just prescribe pain meds, she is too young for that and I don’t want her to experience these headaches while in college. I am not sure how many, if any doctors in Fargo treat this condition so was glad to hear of your experience with Mayo. I will pray for continued healing for you.

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