Our son's visit with the neurosurgeon today went well. She measured (and had a colleague verify) only an 8 mm herniation (not a 10 mm herniation as the radiologists suggested). She also feels that he's mostly asymptomatic; though his headaches could be partially from the Chiari (she feels they're mostly migraine type). She saw fluid flow on both sides of the cord--though she did say it was crowded. She is scheduling a Cine MRI to measure flow and check for Syrinx; but, isn't in any rush to get this done. She also doesn't feel that his absence like episodes stem from the Chiari; instead she feels they're some sort of seizure.
As for the Asperger's, she said she sees many children who have both Asperger's or Autism as well as asperger like or autism like symptoms as well as the Chiari. Her feeling is that one magnifies the symptoms of the others. But, she feels our son is textbook Asperger; and, if we do have surgery at some point in the future, its likely we won't see a change in behavior or cognition.
For now, its monthly follow-ups with the neurologist and 6 month follow-ups with the neurosurgeon; with MRIs at 6 month intervals (assuming nothing shows up on the Cine). Any decision for surgery will be tempered by whether there is a syrinx (a pocket of spinal fluid) along the cord, whether the tonsils drop down further later, whether his symptoms multiply or worsen, and whether or not he begins to exhibit nerve damage. It's a situation few children actually resolve through growth (though some never experience any additional symptoms); and he'll be a long-term neuro patient needing close monitoring.
Yes, a lot can go wrong; but, the surgery is fairly common now (not that its any easier or less risky). Thankfully, we're with one of the top rated neuro surgeons in the US. If we have to go this route to temper nerve damage at some point in the future; we're in good hands.
