So we found out through a MRI that Hadley has a fairly large Syrnix. It is actually called Syringomyelia...yeah I cannot pronounce it either. I think I will stick with Syrnix, much easier. Anyway, it is a fluid filled cyst in the spinal cord. If I was tech savy enough to put her MRI pictures up it might help but since I'm not the syrnix begins at her shoulders and runs down just below her chest in the spinal cord. How does this happen? Well Hadley has Chiari Malformation II and this is something that is very common with Myleo SB babies. It is basically the downard decent of the brain tonsils (my word, not the scientific one :)) and this can block the flow of cerebrospinal fluid and in Hadley's case create a large syrnix. The syrnix cannot be removed but the goal is to reduce the size of it and this is done through a chiari decompression surgery. It sounds scary and it pretty much is to us. To Neuro folks who see it daily, probably not so much. So I will try and explain the decompression surgery which is going to be taking place very soon. They go in and remove part of the vertebrae to relieve pressure. Then they have to create a graph to cover the opened bottom part of the brain. Our neurosurgeon literally drew this entire procedure out on the paper that covers the exam table! I wish I would have taken that with me, even though I would have not been able to figure it out now. He was very good at calming us down and we trust him completely as this with be his 4th surgery on our daughter (closure, shunt, shunt revision, and now decompression) who by the way will be 9 months old this week! We are hoping to see some positive things from this surgery, as all surgeries, but in Hadley's case she is very weak, diagnosed Hypotonia, and he thinks this is contributing to alot of those issues, especially in the upper torso area.
More to come in the next few days as we prepare for this surgery.
No comments:
Post a Comment