July 22, 2008
Today was our meeting with neurosurgeon, Gary Mathern, neurologist, Raman Sankar and epilepsy nurse specialist, Sue Yudovin at UCLA. Jason and my mom both took the day off from work to accompany me and Aiden.
The purpose of this meeting was to clarify why some team members felt Aiden should try more drugs before surgery should be considered and why some felt surgery was urgent.
After quite a long discussion, it was obvious that although surgery is an aggressive approach, it is the best decision for Aiden. After Dr. Mathern left the room, Dr. Sankar told us that if his child ever needed brain surgery, he'd want Dr. Mathern to do it. I've heard numerous people say that he is the BEST.
Dr. Anne Comi in Baltimore is still in the process of reviewing Aiden's records and tests. At this point, I'm just waiting for her opinion before I call to set a date for surgery.
Tomorrow, I'm taking Aiden to the lab to find out his blood type because he will need family and friends to donate four to five units of blood once a date is set for surgery.
Tuesday, July 22, 2008
Tuesday, July 8, 2008
New Opinions on Surgery
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.
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.
Wednesday, July 2, 2008
Reconsidering Hemispherectomy
July 2, 2008
I got a call last Friday from Sue Yudovin, Epilepsy Nurse Specialist, at UCLA. She told me their team met and discussed Aiden's case and they don't think Aiden should have the surgery at this time. Reason being, his seizures aren't severe enough and there are still medications we haven't tried.
If you read my earlier post titled "surgery plans" this is in total contradiction to what Dr. Mathern, the neurosurgeon, told me when we met on June 16th.
At this point, I don't know what to do. I'm so confused.
On one hand, I'm kind of glad Aiden might not have to face a hemispherectomy right now, but on the other hand, if we wait too long, his chances for a good outcome will be less.
In the meantime, Sue suggested we add Lamictal to his regimen. I'm going to see what Aiden's local neurologist thinks about that tomorrow at 4:15pm.
I'm thinking about getting a second opinion at Johns Hopkins. I'm checking to see if they can request all of Aiden's tests performed at UCLA and give me an opinion based on that or if I have to fly out there and have them perform their own tests.
More to come...
I got a call last Friday from Sue Yudovin, Epilepsy Nurse Specialist, at UCLA. She told me their team met and discussed Aiden's case and they don't think Aiden should have the surgery at this time. Reason being, his seizures aren't severe enough and there are still medications we haven't tried.
If you read my earlier post titled "surgery plans" this is in total contradiction to what Dr. Mathern, the neurosurgeon, told me when we met on June 16th.
At this point, I don't know what to do. I'm so confused.
On one hand, I'm kind of glad Aiden might not have to face a hemispherectomy right now, but on the other hand, if we wait too long, his chances for a good outcome will be less.
In the meantime, Sue suggested we add Lamictal to his regimen. I'm going to see what Aiden's local neurologist thinks about that tomorrow at 4:15pm.
I'm thinking about getting a second opinion at Johns Hopkins. I'm checking to see if they can request all of Aiden's tests performed at UCLA and give me an opinion based on that or if I have to fly out there and have them perform their own tests.
More to come...
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