Today was the day for the initial visit with Dr. Oaks. He is the guru that Dr. Greene from Children's Mercy Hospital recommended we go see. Dr. Oaks has treated over 400 patients with chiari 1 & chiari 0. What John Morgan does have is a syrinx, which is cerebral spinal fluid (CSF) that has been collecting and pressing on the spinal cord. CSF is normally produced in the brain and flows out through the base of the scull into the body. Dr. Oaks does not technically view JM's case as a chiari 0, however he is treating the symptoms as if it were. What he expects to find is scar tissue which is causing the formation the syrinx. The operation is to remove a small amount of scull at the base to allow for the CSF to more evenly flow out of the scull. He will create an orifice using some tissue from just below JM's scalp to form a "sling" to hold back the sack that surrounds the brain. The scar tissue does not show up in the MRI that was performed on August 11. If there is significant scar tissue, Dr. Oaks may insert an additional conduit (tube) to allow for better flow of the CSF out of the scull into the body. The question remains, is the syrinx causing the issues with JM's leg? We don't really know at this time. There are risks involved with performing the surgery, however if we do nothing at this time there could be additional symptoms due to the syrinx pressing against his spinal cord. We have been in communication with JM's pediatrician, Dr. Grossman, and he is supportive of our decision to perform the procedure. John Morgan will be admitted at 6:00 AM tomorrow.
Please keep us in your thoughts and prayers during this difficult time. Much Love from us...
As a humorous aside, Dr.Oakes went to the University of Missouri and waited tables at Stephens College to meet girls. For those of you who don't know, Stepahnie went to Stephens College.
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