I'm new to this group. My daughter who is 17 has been diagnosed with Chiari Malformation last year. In the last month it has gotten worse with 4 episodes with this last one going from the 24th to the 28th.
We saw a Neurologist a year ago but I don't feel like her expertise is in this area. We also saw a neuro surgeon who we liked very well. I sent her a message today about the changes in my daughter and they recommend an appt with them the surgeon and a neurologist. So My question to you. Does anyone know of a Cleveland Clinic Dr. a neurologist that specializes in Chiari that will see a 17 year old? Because of my insurance I have to see a Cleveland Clinic Dr.
Dr. Luciano and Dr. Recinos are both neurosurgeons. We have seen Dr. Recinos and liked her very much. Her Office is the one that said my daughter should make an appt with them and a neurologist. My quest is to find a pediatric neurologist that specializes in Chiari.
My experience at OSU was that the Neurologist didn't actually specialize in Chiari, only the Neurosurgeons. I have seen my NS three times, twice pre-op and once post-op and will see him at least 4 more times, but will remain his "patient" until he leaves the practice or I wish to have a different NS. The neurologists have been great coordinating with the NS to treat other conditions and such. So you may have to find a pediatric neurologist who is willing to work closely to the neurosurgeon. It's good to build a team of doctors that will communicate and work together to best help your daughter. If you plan to continue seeing her, maybe see if Dr. Recinos will recommend a neurologist that she has worked with before. Hope this helps and you guys can find a trusted team that you're comfortable with. Will your insurance not cover a Children's Hospital? If it would, and you can get her in there, often times they will treat patients into adulthood if they were diagnosed and treated prior to turning 18. They would be more specialized in pediatrics, but she is so close to that 18 border. Best wishes and sending positive thoughts your way!! XOXO