Friday, April 23, 2010

Heading to Cincinnati

Just a quick update to let you know we are heading to Cincinnati on Sunday night for a full day Monday to include a 3D CT scan of Danica's skull base and cranial junction (under sedation), a meeting with a team of geneticists and a meeting with Dr. Kerry Crone, the chief neurosurgeon at CCH. After reviewing Danica's scans and the op report from her November surgery he would like to explore the possibility she may have a genetic soft tissue disorder in addition to her Chiari. Because of a strange bone anomaly Dr. Cohen found and removed in her first surgery and her main presentation being tortocollis Dr. Crone believes it is prudent to perform these other tests prior to making any call on how a second decompression would be performed.

We also heard from Dr. Herbert Fuchs at Duke on Wednesday. He seemed very confident that if we open the dura, put in a dural graft and coagulate the tonsil there would be no more reason to remove any additional bone.

Based on three differing opinions and surgery methods we plan to seek a fourth opinion from Dr. Ben Carson at John Hopkins following these tests in Cincinnati. My sister in law's aunt Jo works at JH, and she was able to put me in touch with Dr. Carson's PA directly. The PA shared that of the four neurosurgeons at JH who perform Chiari surgeries they all have different mehtods. She confirmed how confusing it is to make a decision on what is the best surgical approach when opinions differ among the experts.

So many of you have kindly asked what we need. Very simply we need God to direct our steps to understand who is the right surgeon for Danica and what is the best surgical method to bring her relief and long term healing. Please keep praying! We also need measures of physical and mental and emotional strength to keep doing all this and working our jobs and taking care of the day to day things. We are tired and discouraged. Please pray for Danica as she undergoes more sedation Monday. It is a new hospital and new faces and a long trip for her. Please pray for Delaney as she stays here with my parents. She has been such a brave girl too and has made many sacrifices of her own through this last year.

Our Hope remains!

1 comment:

  1. Sighing with you, friend... praying for wisdom and strength and for restorative rest for all of you as you continue walking this dark path. i LOVE you so.