Looking for pediatric neurosurgeon around CT/east coast

Have a child with SM/Chiari? Share issues unique to children and their caregivers.

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Looking for pediatric neurosurgeon around CT/east coast

Postby sammouche » Wed Jun 11, 2014 9:26 am

Hello,

I just found out that my 13 year old daughter has a syrinx from C2/C3 to C7, I don't know the diameter but it's characterized as slender, so I recognize they may not want to operate, although she is not asymptomatic. No sign of chiara malformation. She has had many symptoms the fast few months where she's had the numbness and pain in her arms, sometimes weakness, and we were constantly told it was just stress, although I kept going back to the doctor. I think our pediatrician was shocked by the MRI result. Unfortunately he is not really familiar with this condition so I am struggling to figure out what I should be doing. I knew nothing about this until I started researching it a few days ago. From what I've read I gather I should be looking for a neurosurgeon as opposed to a neurologist, what do people think? Can anyone recommend anyone somewhat in the area? I will travel if I have to, I have Anthem BCBS and they have told me I can go to any state as long as it is in network, but I would think with surgery and followups etc. it would be better if it were within driving distance, but I will do whatever is best for my daughter. I have my doubts about the Hartford Children's Medical Center since I have not heard one mention of them regarding this condition. I have come up with a couple of names, Dr. Michael DiLuna with Yale and Dr. Richard C. Anderson with Columbia, does anyone have any experience with them? Or can you suggest someone else? Any help would be appreciated since this is all very new to me.

Thanks.
Shannon
P.S. I found out that Dr Diluna isn't board certified so I scratched that one, and I was wondering about Boston and the Children's Hospital there, and whether anyone had experience with one of those surgeons.
sammouche
 
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