03/31/2026
Our little 1 in 1,000
Chiari 1 malformation (CM1) is a structural defect where the cerebellum extends into the upper spinal canal. In bubs case, the cerebellar tonsillar ectopia, along with the right cerebellar tonsil, protrudes 7-8 mm through the foramen magnum. On top of that, mega cisterna magna has also been noted. Mild mega cisterna was an incidental finding where the space at the back of the brain is larger than normal BUT is usually harmless.
7-8 mm exceeds the threshold for this condition, 5 mm is typically the limit. This means that the cerebellar tonsils are positioned below the opening at the base of the skull. In bubs case, there is pulsatile bidirectional flow of CSF (cerebrospinal fluid) anteriorly and posteriorly at the craniocervical junction which is also abnormal causing brain stem compression.
We got things moving along. His Neurologist appointment got moved to April 15th instead of waiting until June. The EEG is still set for May as of right now, they’re hoping that gets moved up as well.
Time for the big part….
His P*P has really been pushing to get him seen sooner for his Chiari. So I’ve been doing research and found a Dr in New York. I’m in a few groups for this condition to learn more and have also been recommended to see this Dr. I made the call today and we are in the process of getting everything sent out that way. Here’s the kicker, he needs a FULL spine MRI AND he needs a dilation exam BEFORE getting seen by ANY neurosurgeon which Philly left out. Having the full spine MRI and the exam is a HUGE part of the decision making on what’s best to help. We’ll be able to see if he has a syrnix, tethered cord or any spinal issue. The dilation exam will detect signs of increased intracranial pressure due to blockage of cerebrospinal fluid. Both which are significant in Chiari cases. We have 3 days I believe before we hear back from NY, I’m currently in the process of trying to get his imaging CDs so I can send those out as well as all the “paperwork” I’ve had to email today. Of course I also made the call to his P*P to get the ball rolling on getting his MRI on his spine and the exam done ASAP. We’re hoping to hear them tomorrow (fingers crossed he can get in this week for them)
I’m one very emotionally exhausted mama. Stressed between work, the holiday, all of this and trying to get big brothers birthday stuff ready/figured out..
