Alex and Chiari

Alexander was diagnosed with Chiari in October, just two months after we came home from the hospital with Gabriel. I had a feeling that he had it after our experience with Gabriel. I'm quite sure the neurosurgeon agreed to an MRI on Alex just to appease me or to prove me wrong.
I would have been more than happy to be wrong this time. Since Alex's diagnosis, we have been to nine specialists total for him. We've had a cancer scare and numerous other scares, not all of which have been ruled out yet since it can take months for genetic panels to come back from the lab.
My poor little 48 lb 8 year old cries in pain, complains of dizziness and headaches, and numbness, and gags on food. He has a tough time sleeping and we know that he has central apnea. His leg pain is significant enough to excuse him from P.E. class. His pain breaks my heart daily. The multiple pain medications aren't diminishing his pain enough and I hate that he has to take pain medication at his age. It seems like something is wrong with the universe.
Alex screams a lot now. It's a reminder of Gabriel's pain a year ago without the aggression, for the most part. I've tried hugging him and holding him, hiding my own tears as he tries to make sense of his physical struggle.
We now consult with two neurosurgeons. Chiari is a fiery beast. We have to beg the surgeon to cut our son's skull open in an effort to relieve his symptoms, while not really wanting to face the reality at all. We have half a notebook full of notes about his pain, his sleeping habits, his behavior, and his eating habits.
As with Gabriel, the surgery is not a permanent fix, it's a band-aid. Alex has a pineal cyst that we have to keep an eye on as well as a large right ventricle. He has arachnoid webbing right where the chiari is located and it is believed that this is where his cerebral-spinal fluid is blocked, but the MRI in October wasn't clear on that area.

Alex experienced four MRI's, taking a total of 13 hours including travel time and from the hospital. On two Thursday nights, we made our way to the hospital in order to complete for extensive flow study (CINE) MRIs to see if we can find a tethered cord, syrnx or CSF blockage.
Alex was an incredible patient. He refused sedation because he wanted to experience the entire MRI again. A couple things had to be repeated due to movement, but he made it through it. A few of the hospital employees commented on how I was able to get Alex to stay so still. Nothing, I did absolutely nothing was all I could reply. I wish I had a magic formula but it was really all Alex's doing and had nothing to do with me or my parenting.
If the doctors can find either of these two things, Alex's surgery goes from a 50% success rate to an 80% success rate. I like the 80% odds better. The surgeons due too. They don't want to cut his head open, remove vertebrae, skull, and cerebellum and it is a big failure.
So, here we sit, our summer in limbo, until we have our meetings with the neurosurgeons again to see if the MRIs are more clear, allowing us to make an informed decision.