June 9, 2020

After having such a positive experience and feeling so grateful to have
found an amazing Neurosurgeon, we decided to pursue all of Paisley’s medical
care in California. We felt due to how complex Paisley is, this would make it
easier on everyone to have a medical team all within the same hospital.

Right after Paisley’s decompression where the stent was pulled back, we
noticed her head tilt was much improved. Unfortunately, we didn’t notice much
of a change with her left eye drifting and her seeing double. As months went
on, we noticed her tilt getting worse again and she was complaining how badly
her eyes hurt. She was having “episodes” where her eyes would get big
and she would make strange faces. It was heart breaking to see. Knowing we gave
her 4th nerve almost 6 months to heal, we knew she would need eye surgery
afterall.

We went back to California to see Paisley’s Neurosurgeon on June 9th, We
were supposed to go back in April but due to Covid, it was postponed. We
decided to see an Opthathmalogist on this same trip.

Paisley had a brain and spine MRI. We are so thankful that Stanford can do
this MRI without sedation. Paisley has been under anesthesia way too many times
to count. We met with her Neurosurgeon and her images looked great. In fact,
her 1 syrinx had almost disappeared. The other 2 are still present but are
stable. This progress could be largely due to her being detethered.

We met with a new Opthathmalogist. It was a very thorough appointment. We
were so incredibly impressed. Unfortunately it was determined Paisley needs eye
surgery. We discussed in great detail how extreme her deviation is and there is
a possibility she will need more than 1 surgery. Her Ophthalmologist also
warned us that she could have a masked nerve palsy in the right eye as well.
Due to Paisley’s condition she said she would expediate her surgery. As sad as
this makes us, we know it is so needed to give Paisley much needed relief.
She has been seeing double for over 2 years and her neck pain has increased due
to her head tilt.

 

Going home!