Talked to Diana Pillas at Johns Hopkins Today - The Wheels are Turning!!

02/26/2008

About 1:30 PM today, I was contacted by Diana Pillas at Johns Hopkins. She is the Out-of-State Coordinator for the Epilepsy Center and seems like a nice lady.

Diana Pillas
Pediatric Epilepsy Center
Meyer 2-147
Johns Hopkins Hospital
600 N. Wolf Street
Baltimore, Maryland 21287-7247
(410) 955-9100

She summarized where we are as follows:
They first heard from Dr. Chacon on 2/20/2008, so “that’s only been a week”.
They never treat Rasmussen’s as an emergency and never recommend surgery in “weeks rather than months”.
Also, she expressed that they don’t classify Rasmussen in stages (I, II, III, IV). **although, I’ve seen this in papers before.
Although she said this nicely, she said that I need to “take a couple of deep breaths”. :-)

Johns Hopkins has done 145 hemispherectomies since the 1980s (a few before that), and average about 9 per year. (math?) Approximately 50% of these are Rasmussen’s patients.

She recommended that when talking to a facility, you need to ask:
1) Speak to families of other hemi patients
2) Preparation for Rehabilitation (Kennedy Kraiger keeps them for 2 weeks)
3) # of hemispherectomies per year and total.

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