I have a 9 y/o daughter that has had symptoms of headache, dizziness, nausea, aching for a couple years. PCP did work ups & never really found anything. Well 4 weeks ago she had a bad fall down hardwood stairs & hit the back of her head off 7 steps. Diagnosed w/ a concussion. 4 weeks later all previous symptoms worse, headache nonstop of varying degrees, dizziness, nausea & tingling in legs which is new. MRI turned up Chiari Malformation Type 1 of 7 mm. Neurosurgeon wants to try migraine meds prior to considering surgery. Her appointment for neirologist is taking over 3 weeks. Had full MRI of cervical , thoracic & lumbar regions. Get results in morning. Meanwhile after straining for bowel movement tonight her symptoms are flared up & now we can add double vision to the list of symptoms. She seems to be getting worse. MD in call told me Chiari is never an emergency call neurosurgeon in morning. I am an RN BSN. I feel helpless up until 1230 am w/ sick child. Who will miss yet another day if school. I feel like I'm getting no where fast. HELP?? Any suggestions?
Seems u have had most of the testing done....a CINE MRI is next to rule out a CSF obstruction and over crowding, in addition to ruling out a few other related conditions...sleep apnea, ICP, POTS,...the MRI's u had done should help rule out disk issues, syrinx's, tethered cord,....
And I agree with Viv u do need to find a true Chiari specialist that treats pediatrics.....
And the Dr telling u that Chiari is not an emergency has no clue what Chiari can do, not that ur DD is in a medical emergency, but it can and to discount it that way is malpractice in MHO.
Make sure u get all copies of all MRI's and the reports so u can get 2nd and 3rd opinions more easily .
Hi. Im sorry for all you're going through. My chiari was found after opening a car door into my face trying to enter the vehicle and knocking myself out. Was dx with post concussion syndrome. It wasnt until i had trouble walking and whole body numbness started that we were able to find out after many many frustrating (multiple) dr visits. I agree with Viva. Please seek a peds chiari specialist. Not many PCPs, NS etc are familiar with chiari and the process can be frustrating and depressing. The support here is wonderful so pls stay connected. Also as a mother its so frustrating when your child has health issues (been thru this as well just not with chiari) Trust your gut and keep seeking answers until you feel comfortable. Your family is in my prayers. Hugs!
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