Well...we are FINALLY home! So exhausted in every aspect possible..so,here is the recap of the appt with the neuro-surgeon: DEVESTATING.He said he had NEVER seen a syrinx (the mass on her spine) the size of Klover-Raines. He showed us the images to be more specific, and it literally is the width and the length of her ENTIRE spine !Also,in general chiari 1 malformation causes the base of the skull to create an opening where the spine can protrude through,but in Klover-Raines case,the opening in her skull was there,but while her spine IS protruding upward,her brain matter is growing DOWN into her neck(spinal column) ...the doctor also said this was not anything hed seen and it was REALLY BAD. He said there is no option here,that without the operation she WILL die in her condition, so he wants to fast track the operation BUT (and this part causes more worry with myself AND the surgeon...) he cannot do the brain surgery until her heart operation is taken care of,and were running on limited time....this week i should be getting a call for an operation date one way or the other and it looks like itll be happening in a SNAP!...
Posted on: Tue, 11 Nov 2014 02:50:20 +0000
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