Kade finally had his MRI done last Thursday. And before we left, Dr. Makris told us it was indeed Chiari Malformation and that he did have a syrinx also, which is a fluid filled cyst in the spinal cord and that they would set us up an appointment with a neurosurgeon. We seen Dr. Oakes today, where we got some answers. Dr. Oakes done a few tests with Kade, asked us some questions, and then asked the nurse to take Kade out for a little while.
Dr. Oakes then explained to us that Kade needed the operation, but it was not going to be a typical Chiari Decompression surgery. They were going to be removing a 20cm x 20cm piece of his skull above where his spine and skull connect (which I was aware of), but also they would be removing about a 20cm segment of the top of his outer spine and then fuse his spine to his skull. That is the part I was not prepared for. So, Dr. Oakes will be doing the skull decompression and Dr. Rozelle will fusing his spine to his skull. Dr. Oakes said that Children's performed about 500 Chiari operations last year, and of the 500, only about 5 to 10% of those were the type of operation that Kade is going to have. Dr. Oakes went over any and everything that could go wrong, and told us he did not have a magic wand to fix our problems. Needless to say I walked out of there in tears. The nurse pulled me to the side, hugged me, and told me that he may not have a good bed side manner, but he was the best surgeon there was, and she would definitely let him operate on her own children if it was ever needed.
Dr. Oakes believes Kade was born with Chiari Malformation because his skull did not form the way it was supposed to. It has just took it this long for his symptoms to become severe enough, that we finally found out what was causing them.
Next step will be to go for some type of special CT scan that will give them a better look at his upper spine and after that test, we will meet with surgeon B, Dr. Rozelle, who will be performing that part of the surgery. His actual surgery should be some time in February.
Continue praying for my sweet boy. But, in the mean time he will be getting extra loving from his Mommy, and anything he wants. Last time we went to Bham, he wanted some fish. So, he got some fish! This time he wanted a new Wii game, so guess what? He got a new Wii game! Maybe not the best parenting, but hey, it works! :)