Our neuro report/appt. yesterday did not go that well. He thinks CeCe's only option at this point is the decompression surgery. He will also be consulting today with her ENT to discuss her need for a trach.
He went ahead and added her to his schedule next week for an in-hospital MRI on Monday and the decompression surgery on Wednesday. Brian and I are weighing everything he has said and just got off the phone with our neuro in Philly and he agrees with everything our neuro is telling us. He also said that they only see this in about 10% of SB patients.
The neuro also said that he can't guarantee that this will make any difference with CeCe's issues...in fact, we may not know for months what the results are of the surgery as it can take that long for her body to respond. If the surgery doesn't help her chiari, she will most likely end up with a trach and a feeding tube and we wait to see if just time and growth will help her then.
Not sure what else to add at this point, we will post an update as soon as we have more information.