TSC surgery on a 6 month old baby, looking for recommendations...

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Hi, My daughter was diagnose with TSC a month a go, she is now 2 months and we

will be going to the neurosurgeon next week to schedule surgery in June ( She

will be 6 months at that time) She has a fatty filum with conus termination

between L3 and L4 In addition there is a subcutanueos with small dermal sinus

tract which extends at the L3 with a small amount of fat extending superiority

to attach to the dorsal aspect of the spinal cord at the L1 level. I am concern

and will like to know what to expect and what to ask. I have read different

information about TSC and is the uncertain that is the scary part. Please

advise me what to expect and what to ask. Please share your experiences with

our family.