Hi, I'm the mother of a two year old little girl who was just diagnosed with Chiari 1 malformation. She isn't walking or talking yet and can only eat soft things without choking. She is also blind (optic nerve hypoplaysia). We just aren't sure if her delays are from her lack of vision or because of the Chiari 1. Any advice would be helpful. We don't want to put her through a surgery but want to do whatever would be best for her. I would really appreciate any responses, thanks!
I am so sorry ur little one is having to deal with this condition....and u, as a mom, I can not imagine if my DD was to have had this and at that age....I know this is not going to be an easy journey for u.
My suggestions would be find a pediatric Chiari specialist that will do testing to check her CSF to see if she has an obstruction, and then check for other related conditions and issues b4 u consider surgery, but with children there are a few things to be aware of...not many drs know how chiari can affect us and do not check for sleep apnea, and for a child her age this should be done asap if it hasn't already been done.
Next, u will want to know if she has tethered cord, as it can affect bowel and bladder issues, and legs....
a syrinx...this should be done with a MRI of the cervical, thoracic and lumbar spine....some Drs only check the cervical spine, a syrinx can form newhere in the spine.
The choking is a very Chiari thing and swallow studies do not provide insight as it is a neuro issue and not a physical one...I guess it rules that out...but other then that it does not show y we choke.
Surgery is not a cure but a means to restore CSF flow and slow progression, no one wants this surgery, but many that wait sometimes wind up with more issues or perm nerve damage as a result.
Find a dr well experienced with this, one that does research as well as surgery for chiari and chiari related issues only....
Know that u r not alone.....if we can answer ur questions we will, better still we will listen even if we can not.
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