Today my 15 yr old daughter had an appointment with a NS for second opinion. She has 10mm what i had been told was chiari. Now we are being told they are not sure what it is. Chiari, psuedotumor, tether cord. He said she has symptoms of all 3. The NS was awesome and spent 3 hours with is going over MRI s. I just don’t understand why these things can’t be diagnosed with MRI. He is saying he wants to start rulling things out and the only thing he mentioned was possible ICP test…depending on reports from previous opthomologist appointments.
Has anyone run into this problem? I thought it was a given she has chiari but from what I understand him saying is a tumor could cause the tonsils to be lower as could a tether cord…thus not being chiari??
Chiari Type I Malformation can be congenital or aquired. Aquired is pulled down by tethered cord, pushed down by tumor, cyst or fluid, or dangling due to connective tissue disorder. Congenital is when it is squeezed from skull being too small. It is still Chiari, but treatment could be different. I hope he really is a Chiari specialist. There are too few. The only pediatric specialists that I know of are Dr. Eric Trumble, Orlando, FL - Dr. David Frim, Chicago, IL & Dr. Gerald Grant, Palo Alto, CA. I hope your NS, has good experience. Ask him lots of questions about his experience. #1 how many Chiari surgeries does he do weekly? annually? I would say a minimum of 50 per year or I wouldn’t consider him very experienced. It seems good he is doing test to see why she has Chiari. I hope your daughter is one of the lucky ones with a Neurosurgeon who knows what he is talking about when it comes to Chiari
