I haven’t posted for awhile. My daughter 11 has a 4-5mm herniation and is a patient of Dr. Frim in Chicago. We had to change insurance to get to see him and get someone to believe anything was wrong. In February we finally saw him and loved him. He said yes Chiari but thought she had cerebral spinal fluid leak making it worse. We spent four weeks between April and May in LA with the CSF leak specialist getting spinal CSF leaks fixed.
It seems like as we fix one thing it leads us to another problem. Probably the reason she developed the spinal CSF leaks was increased intracranial pressure. Now the huge question is it the Chiari causing the high pressure or high pressure making the Chiari worse? We are going to be in Chicago for several weeks in September. Dr. Frim wants to try a lumbarperotineal drain to see if he can lower her pressure without making her Chiari worse or decide if she needs a decompression surgery.
Has anyone here had both high pressure and Chiari?