I have daughter (age 9) who has been recently diagnosed with Chiari Malformation and Scoliosis. The CM was discovered by a pediatric ortho after a TLC MRI to discover the cause of her progressive idiopathic scoliosis. Over the past two yrs. she has suffered from migraines of increasing severity and frequency, particularly over the past 7 months. She was referred to a neurologist after her MRI by the ped. ortho (who feels that she is having a "top down" issue), an inexperienced Neuro doctor, didn't agree. She ordered no CT scan, no brain MRI, just looked at the TLC MRI that showed the Chiari and stated that it didn't look that severe to her. She ordered Elavil to combat the migraines, a topical cream for her motion sickness, said she'd order physical therapy for the scoliosis and a test (ABRE) to see if the hearing issue is brain-related. This was several weeks ago, none of those things have been ordered. My daughter states that the pain in her spine continues every single minute of the day. Her migraines occur at least once a week, this past weekend she had one for 72 hrs w/vomiting. Any advice that you may have as to what direction we should take next, would be most gratefully appreciated.
Thank you so much for your prompt response, Doctor. You had treated my oldest daughter (from Kentucky) last year, just a few days after Christmas, for a traumatic brain injury. Your compassion and outstanding care for her, prompted me to solicit your advice here. We live just outside Columbus and appreciate the suggestion that we seek the skills of a pediatric neurosurgeon. Neurology just hasn't been helpful, thus far. I do appreciate your taking the time to read my question and to respond. God bless you for your kindness...
My teen has Chiari and the hospitals here in the UK have basically told her to learn to live in pain. Its destroyed her life, ruined her physical career aspects. The meds have caused no end of problems elsewhere whilst doing nothing to ease the pain of chiari. She's had mri, xrays of brain and spine, even counselling as they claim the pain is partially psychological.
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