We met with the neurosurgeon last week, Dr. Madsen. There was some kind of a mixup which was extremely frustrating. We got there and no one in the dept. knew of our appointment and referral. After spending an hour getting that straightened out, we finally met with Madsen who apparently has dealt with hemimegalencephaly (he usually does epilepsy surgery).
He told us more about hemisperectomies, but told us that at this point the discussion is hypothetical because Ella’s seizures are under control with medication. However, if she does need radical brain surgery it is better to have it done before the age of six so that the other half of the brain will have the best chance to compensate for any functions lost. He also told us something new about Ella. Her right lateral ventricle is overly large which is atypical even for HME. He suggests having this monitored by ultrasound and frequent head measurement. She may need a shunt for this or some other treatment. Tomorrow we have an appointment with a geneticist who will check Ella.