Back to California we go! This is our 5th trip to California for Paisley in less than 11 months. It’s so crazy to think that 11 months ago we made our first trip to California. At that time, it felt overwhelming and somewhat impossible to travel out of state for medical care. I didn’t want to leave the twins and be away from home. I wasn’t sure I could do it. Looking back now, making that trip last August was one of the best decisions we have ever made.
We left on July 7th with surgery planned for the 8th. If everything went well, we were able to fly back home on July 10th.
Before surgery Paisley’s ophthalmologist discussed the possibility of doing surgery on both eyes. After reviewing Paisley’s MRI further, she wasn’t sure just operating on her left eye would be enough. The left eye is the one that drifts upwards because the muscle above the eye is too weak to push it down. This is ultimately due to her 4th nerve being damaged. Her right eye sits pretty high so her doctor’s concern was that even after surgery her eyes wouldn’t align well. We were not prepared for double eye surgery but knew her doctor would do what was best for Paisley.
Double eye surgery was indeed needed. An adjustable suture was placed in Paisley’s right eye. This was so that if an adjustment needed to be made (muscle moved) then it could be done within 7 days. Thankfully, that was not needed. Paisley’s recover went well. It was difficult on Paisley as she was very aware something had been done to her eyes. She was really bothered by it but like a trooper, she did amazing!
We were able to fly home on the 10th. We had a Telehealth appt with her Ophthamlogist a week later. Her head tilt to the right was much improved but she still is seeing double in certain head positions. Her doctor mentioned Paisley might have the masked 4th nerve palsy she had previously mentioned. This would present as a head tilt in the opposite direction. She reminded us that Paisley might need another surgery unfortunately. We can assume the 4th nerve is damaged and cannot repair itself. She also let us know that Paisley will always see double in certain head positions. This was devastating to hear. This just breaks my heart. Never did we think Paisley would develop a condition that makes her see double for the rest of her life. This wasn’t supposed to be a risk from a decompression surgery. It just makes me so sad. Once we give her eyes enough time to heal, we can attempt to help her double vision by using prism glasses.