July 8, 2008
Since I received conflicting opinions from the neurologist and neurosurgeon at UCLA about performing the hemi surgery, I decided to ask the sws support group for some advise. Quite a few people directed me to Dr. Anne Comi at Kennedy Krieger Institute. I sent Dr. Comi an email on Wednesday of last week and to my surprise, I got a reply from her the next morning. I asked her if she would be willing to review Aiden's tests and medical records from UCLA and give me her opinion as to whether or not a hemispherectomy would be necessary at this point in Aiden's life. She said she would be happy to review the records and give her opinion on course of treatment. I was so relieved that I wouldn't have to take Aiden to Baltimore and subject him to more testing.
I decided to do some research on Dr. Comi. I found that "her clinical expertise is in the diagnosis and treatment of the neurologic aspects of Sturge-Weber Syndrome (SWS). She is a physician advisor for the Vascular Birthmark Foundation and Sturge-Weber Syndrome Community and has served on the scientific advisory board of the Sturge-Weber Foundation. Her research interests center on studying the pathologic processes involved in the neurologic complications of Sturge-Weber Syndrome, including the effects of chronic hypoxia and glucose deprivation on brain tissue and neurons, as well as the interactions between seizures and impaired blood flow in the brain. Through both clinical and basic research, she hopes to determine approaches to preventing neurodegeneration resulting from chronically impaired blood flow in Sturge-Weber syndrome."
I'm so happy to have found an "SWS expert" to review Aiden's case. I feel that once I have her opinion, I can make a decision and feel at peace about it.
I also took Aiden to see his regular neurologist, Dr. Imbus, last week. His opinion is to proceed with surgery. He told me "I'm a medical doctor and we love pushing new drugs on patients. That said, I know Aiden's condition can't be controlled by medication and I suggest you get him fixed." (meaning surgery). He also told me that he will be holding a conference at the end of the month and he'd be willing to present Aiden's case to all the attending neurologists there and gather their collective opinions.