Monday, May 14, 2018

May 3, 2018 "Optic Nerve Solution...Finally!"

Have I said lately how much I LOVE our UNC doctors? Here is another example of what makes them so great. Dr. Grace has been just as worried about Rayden's optic nerves being swollen as I have been. She has messaged me numerous times through this long process, some even late at night just to calm me down. Today she even told me she got a second opinion ON HER OWN, from Dr. El-Dairi, Pediatric Neuro-opthalmologist at Duke. Now if this doesn't speak of her genuine concern and compassion for Rayden I don't know what does!!

Since Rayden's optic nerves have not changed since we first noticed it in January, all three specialists, Dr. Grace, Dr. Elton, and Dr. El-Dairi, agree that Rayden's optic nerves must have irreversible nerve damage from his massive hydrocephalus at birth. Since he is showing no other symptoms and his MRI's are unchanged, they believe this is just what his optic nerves are going to look like. If this were anyone else, without Rayden's background, it would be an emergency situation.

Even though Rayden's vision was better today (20/40 instead of 20/80 in the left eye), Dr. Grace believes there is already some degree of vision loss from the optic nerve damage. She believes he may have some peripheral vision loss that we won't be able to identify until he is older.

Strabismus eye muscle surgery is scheduled for June 22.

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