Our neuro report/appt. yesterday did not go that well. He thinks CeCe's only option at this point is the decompression surgery. He will also be consulting today with her ENT to discuss her need for a trach.
He went ahead and added her to his schedule next week for an in-hospital MRI on Monday and the decompression surgery on Wednesday. Brian and I are weighing everything he has said and just got off the phone with our neuro in Philly and he agrees with everything our neuro is telling us. He also said that they only see this in about 10% of SB patients.
The neuro also said that he can't guarantee that this will make any difference with CeCe's issues...in fact, we may not know for months what the results are of the surgery as it can take that long for her body to respond. If the surgery doesn't help her chiari, she will most likely end up with a trach and a feeding tube and we wait to see if just time and growth will help her then.
Not sure what else to add at this point, we will post an update as soon as we have more information.
Oh Jen! My heart aches for everything that CeCe and you are going through! I'm keeping you guys in my thoughts and prayers.
ReplyDeleteYou have a whole team of specialists working with you guys (mommy and daddy are specialists too). Remember to take care of yourself too!
Jen,
ReplyDeleteI don't really know what to say. I'm praying for you and your family. If you ever want to talk, I know we don't know each other that well, but I can somewhat relate to what you are dealing with. Not that I have any wise words to share, but just to be able to "vent". I am a good listener. Hang in there! You're stronger than you think:)
Hugs
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