4th Decompression and Detethering- January 8th, 2020

It has been quite awhile since we have posted anything so here goes with a huge update… We had some big decisions to make regarding Paisley’s eyes. We knew the stent was too high and most likely the cause of her 4th nerve palsy. We debated if we should pursue eye surgery for her 4th Nerve Palsy OR have the stent pulled back. It was a really difficult decision and the more difficult surgery of the 2 but we knew it needed to happen… We chose to have the stent pulled down. We also decided to pursue further medical treatment for her Chiari with the Chiari Specialist in California. We also discussed the possibility of Paisley having an Occult Tethered Cord. This was something I had been wondering for about 2 years but due to her Syringomyelia and the symptoms being similar it was believed she did not have a Tethered Cord. Being an Occult Tethered Cord, it was not visible on her MRI’s. Due to her legs “itching”, her falling down, very little energy and our inability to potty train her at 4 1/2 years old, we decided it was important to pursue an Occult Tethered Cord. Paisley had her 4th Brain Decompression Surgery on January 8th, 2020. The surgery went well. The stent was indeed too high and pulled down. Our hope was that her 4th Nerve could heal. Paisley also was Detethered. We discovered she does have an Occult Tethered Cord. This was finally the answer to so many of our questions. We are so thankful her new doctor listened to us and knew her symptoms meant something even though her MRI was not showing it. Our entire experience in California with the Chiari Specialist was amazing. The medical team was phenomenal. The hospital was so welcoming. We felt so calm and at peace during this entire experience which was such a relief during such a stressful time. Paisley’s recovery was amazing. She was eating soon after surgery which was so different then previous surgeries. She even asked for cupcakes😊She was discharged from the hospital on January 13^th and we stayed in a hotel until January 18^th. It was such a long time away from home but very much needed to get Paisley better.