Just to clarify... Sophie's case was presented at 2 surgical conferences. One at Children's Hospital of Michigan (CHM) presented by Dr. Chugani and one at St. Louis Children's Hospital (SLCH) presented by two neuros that Sophie has seen there in the past. One of the neuros is actually an epileptologist (a neurologist that specializes in epilepsy) who I will refer to as Dr. Epi. We met Dr. Epi during Sophie's 24 hour video EEG at SLCH last month.
Late yesterday afternoon, I received a phone call from Dr. Epi with the results of the surgical conference at SLCH. Brandon and I had a long discussion with her, in which, she was so incredibly informative on so many levels. To summarize the call, they concluded that Sophie is a surgical candidate and that it would be a case they would take on!!! What a relief!!!
I completely trust Dr. Chugani and the surgical team at CHM but to have another incredible group of doctors agree with their findings...just gives me such an incredible sense of calmness. Calmness that we are doing what is best for Sophie. Still scared out of my mind for her to go through that but at least I know we are making the right decision.
Even though SLCH is only 20 minutes from my house, I cannot imagine having the surgery anywhere but with the surgical team at CHM. Sophie's case is complicated and the surgical team at CHM has the most experience with the type of surgery that Sophie will have. Dr. Epi was even familiar with Dr. Chugani's case load. I sometimes forget that those outside the Infantile Spasms (IS) community may not realize the expertise Dr. Chugani has regarding IS. Families from all over the country...actually all over the world...seek his advice. Click here for his bio.
I will update soon regarding the phone conversation that I had with Dr. Chugani and Dr. Epi.
Late yesterday afternoon, I received a phone call from Dr. Epi with the results of the surgical conference at SLCH. Brandon and I had a long discussion with her, in which, she was so incredibly informative on so many levels. To summarize the call, they concluded that Sophie is a surgical candidate and that it would be a case they would take on!!! What a relief!!!
I completely trust Dr. Chugani and the surgical team at CHM but to have another incredible group of doctors agree with their findings...just gives me such an incredible sense of calmness. Calmness that we are doing what is best for Sophie. Still scared out of my mind for her to go through that but at least I know we are making the right decision.
Even though SLCH is only 20 minutes from my house, I cannot imagine having the surgery anywhere but with the surgical team at CHM. Sophie's case is complicated and the surgical team at CHM has the most experience with the type of surgery that Sophie will have. Dr. Epi was even familiar with Dr. Chugani's case load. I sometimes forget that those outside the Infantile Spasms (IS) community may not realize the expertise Dr. Chugani has regarding IS. Families from all over the country...actually all over the world...seek his advice. Click here for his bio.
I will update soon regarding the phone conversation that I had with Dr. Chugani and Dr. Epi.
7 comments:
Glad to hear you got the reassurance you were hoping for, that's great!
So glad to know you are in good hands!
That's something we may have to consider...where should the surgery actually take place? That's if Bennett sees Chugani on June 5th and they decide he is a candidate.
Certainly not here, that's for DAMN sure...our local hospital just doesn't have the knowledgeable staff. But should it be in Detroit? Do they have the best surgery team for that type of craniotomy? Somewhere else?
Lots of questions lie ahead...so happy to see you get some of yours answered.
That is great news Elaine! I am so glad this team agrees and I know that it does help bring some peace to the decision of surgery.
That must be such a relief! I'm so glad to know that you can go into this with much more peace and confidence.
Having the EEG in St. Louis was a blessing in disguise. To have a second opinion from such a highly regarded team that concurs with the opinion of the Detroit team has to be rassuring that you have made the right decision. While the near future has to be unbelievably scary, I think this development gives us all a small sigh of relief. Thank you for keeping us up to date.
CB
I'm with you...Detroit is totally calling...
((((hugs))))
...danielle
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