Okay, as of today, it’s officially a Chiari 1.5 malformation. Apparently that means it’s 1 . . . and then some. I’m just going to cut and paste the letter I sent out to family today with a few minor additions:
Yes, another update.
Today was Andres’ much-awaited appointment with the neurosurgeon. We met with Dr. Timothy George this morning at Dell Children’s Hospital. Dr. George spent well over an hour talking with and assessing Andres, reviewing the MRIs in minute detail with Andrew, Andres and myself, and explaining the surgery he feels is appropriate for Andres. He showed us on the MRIs where the defect in Andres’ brain is, the bony structures which have contributed to it, the syrinx in the C-spine, the bones, the fatty layer beneath the skin, the marrow, the different regions of Andres’ brain (all normal except the cerebellum), and the totally normal lower spine (praise God)!!!! He must have spent 30 minutes alone showing us and explaining the MRIs.
So, yes, it looks like Andres will be having surgery, probably sometime this summer or early fall. He will have a CT scan which will show Dr. George whether Andres needs to have his spine stabilized as well as have the Chiari decompression surgery (surgery on the skull to enlarge it which will lead to more space and less pressure for Andres’ brain). The hope is that the surgery will cause the syrinx to resolve, since it is the presence of the Chiari that caused the syrinx in the first place. Dr. George says this is a relatively low-risk surgery, since the focus will be on the bones of the skull versus the brain itself. He expects Andres will be in the hospital 3-4 days and the surgery will be about one hour.
We did have lots of good news today, the best being that we have found a neurosurgeon who happens to have been researching Chiari for 20+ years (thank you, Lord, for putting him at Dell Children’s Hospital and having several people in my sphere of influence drop his name). Also, Dr. George feels that Andres does have a symptomatic Chiari 1.5 malformation. Now, I had never heard of a 1.5, it’s kind of an informal step up from a Chiari 1, and it has to do with the fact that Andres’ Chiari is large and extends past a certain point and is symptomatic (I think). He feels that with intervention now, Andres will have NO limitations (other than playing football and boxing, which Dr. George says he recommends avoiding for ALL children :). Andres also passed the neurological exam, so we are still certain no neurological damage has occurred.
Next step? CT scan and then a neuropsychiatric evaluation to extensively assess any processing, memory or learning difficulties and also to give us a baseline for pre-surgery. I visited with a physical therapist a couple weeks ago who recommended this step, and Dr. George agreed it was appropriate. The results of this will not only help us understand some of the possible effects of the Chiari, but it will also help me homeschool him more compassionately and effectively. He has always been a good student, but I suspect he has some memory and processing issues that will show up on testing. Dr. George said he could not for sure say that these are related to the Chiari, but they may be, and they may improve after surgery . . . or they may not. We agreed if they resolve, he gets full credit, if they don’t, he had nothing to do with it. 🙂 Yes, the good doctor has a great sense of humor but was also appropriately serious when we started talking about surgery.
Andrew took off the day from work, so he was able to attend the appointment with us. We are in agreement that Dr. George is the right surgeon for Andres. What a priviledge to be able to walk through this day together.
We thank each and every one of you for walking alongside us, and we appreciate your prayers. We will keep you updated. Andres’ next appointment is in late July, and they would like us to wait until then to get the CT scan so it is up to date. It is quite possible that the July appointment will be considered his pre-op appointment.