For those of you who have had your surgery and are doing well - who follows you now? Your primary doc, neurologist, neurosurgeon??? How often and what's involved ongoing?
I have no clue on this either...I know not my primary because when he found out about what i had he started researching it so beyond that dont know
After my surgery I followed up with my nl but it was never a great relationship or experience. She didn't know about Chiari and didn't want to know about it. She never believed that my continued symptoms were from Chiari until she saw them showing up in other patients. If you can find a good nl that would be the best thing but they are far and few between. Many of them are reluctant to give meds because they need to monitor you while on them. Idealy your surgeon would have a nl that they could refere you to. Everyone is going to need MRI's every few years to make sure that the surgery is successfull. Make sure you look at them and read them don't take their word for it. I have given up on NL for right now and I am using a PCP who has learned about Chiari since I have become a patient. It would be great if we all could have a ns, nl and PCP that would support each other. Why can't that happen? A good doctor is such a gift.