O's eye-crossing started around her 5th birthday, and four months later it has lead us down this crappy little road to watching an MRI video of the flow of her spinal fluid halting then pooling around the top of her C1 vertebrae. We have known it was a Chiari 1 malformation since the MRI a few months ago, but Friday was the big meeting with Dr. Wehby, the pediatric neurosurgeon.
I was actually very calm going into it. I had googled the hell out of it, talked ad nauseum, to friends and family, and knew the right decision would be made. Well, I though I was calm. For the four nights prior to the appointment, there were nightmares. One night it was the classic lost child dream, followed by the zombie invasion, tornado, and falling dreams. But I looked pretty calm, even through the appointment. Oh no, wait, I may have been a bit tense after all, snapping at the kids (did they sense my tension and act out?), looking as if I was one of those parents who can't manage their own brood.
Okay. It was bad.
Even the doc felt bad for me, telling me over and again, "it's okay, dah'ling" (she's a southern women maybe only a couple of years older than me).
Basically, her cerebellum tonsils are descending past her C1 vertebre and restricting the flow of spinal fluid, occasionally allowing the fluid to pool at the base of her skull and putting pressure on nerves, muscles, and cerebellum. This has developed over time, and the eye crossing was just the most obvious symptom. Headaches, numbness and/or weakness in toes and fingers, speech delays, sensory issues such as sensitivity to light and sounds, delays in potty-training, and other things can occur because of the restriction of spinal fluid and the pressure it is causing.
One can't help but see a similarity between the C1M symptoms and her Autistic traits. Can't quite go there yet.
A Decompression surgery has been recommended. A piece of her skull will be removed at the base to make room for cerebellum and eliminate the pressure. It is believed that the removal of the bone will be enough, and any messing around with the dural matter can be avoided. A "simple" surgery. Just bone.
And I was Very Calm while discussing this (in-between snapping at the kids) with the Doc, and Very Calm telling family and friends, and Very Calm until 5pm Saturday when I finally had a chance to sit down and do more research on the surgery, and then I stopped being Very Calm and started to be Slightly Freaked Out.
So not only are we members of the autism community, but apparently there is a Chiari community too. They even have a nationwide annual walk in September. Not feeling very community-minded right now...
What can one say? I am sorry. And best of luck,
ReplyDeleteTatiana
I can't even imagine. <3 try breathing. or an IV of wine.
ReplyDeleteThis totally sucks in some ways. But tell yourself this: She will get through the surgery just fine. The pressure will go down. Maybe some of her other asd symptoms will even get better. But the process of anticipating and getting through the surgery might just suck for you mama and, I am so sorry for that! My mother sent me into surgery three times throughout my childhood to have the muscles inside my eye sockets sliced, shortened and elongated so that the world could look at me with more comfort. This must have been hard for her. What I remember most was the really big bag of licorice I got in the hospital room, and getting to miss so much school.
ReplyDeletePlease keep us posted on how you are doing about this. Let us know when the surgery is approaching. We want to be there for you.
where is that DISLIKE button. I hate that you have this going on with O. there is hope for her as she heals from this surgery. this challenge is bound to make you and your family stronger. I am grateful that you found it now, and not later when she is older and the bones in her body are more solid. I am so so so sorry you have to endure this. sending you positive vibes and thoughts!
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