Chiari Malformation: Surgery is Scheduled

We met with the pediatric neurosurgeon at Duke Children's Hospital this week. We have nothing but wonderful things to say about Dr. Fuchs and his team as he met with us for over an hour explaining Ashlyn's brain condition. He sat there with printouts of her MRI and showed us what Ashlyn's brain looks like and how it is SUPPOSED to look.

Here is a quick summary: Ashlyn's brain is too low and is being squeezed into her spinal cord, which in turn, is starting to block the flow of spinal fluid. The risk of NOT having surgery involves a chance of losing feeling in her arms, hands, legs, and feet, which she will never regain that feeling if she loses it, thus becoming disabled. She was born with this condition and it was not caused by labor and delivery.

After seeing Ashlyn's MRI, the doctor was more than confident that surgery is a must and he has only seen good things come from it. We did not think that her condition was so serious until Dr. Fuchs explained it to us. He did not want to wait even a few months for her surgery. We feel confident in the surgery because the doctor feels confident.

Dr. Fuchs explained the surgery to us, which is technically called a Chiari Decompression. He will make an incision in the back of her head and will remove Ashlyn's first vertebrae and push her brain back up a little so the spinal fluid can get through. Also, the part of her brain that is being squeezed doesn't have much blood flow, so once the doctor releases that pressure, he said he can instantly see that part of the brain start to pulsate again. In essence, the surgery makes more room for the brain.

Ashlyn needs another MRI before surgery to check on a few more things and depending on the results of this, the doctor might have to do a few more procedures in the surgery.

The doctor feels that this will help Ashlyn's coordination and she will be able to catch up physically to other children her age. There will be no long term side affects and she will be able to play sports and jump and run for the rest of her life.

The surgery lasts at least 2 1/2 hours and then Ashlyn will go to the ICU for a day or two followed by a few days in the hospital. She will begin physical therapy in the hospital and then continue when we get home. Recovery is estimated at about four weeks.

It was pretty surreal as I sat there having to schedule my daughter's brain surgery. Never in my life would I have dreamed of this for any of my children. I wish I could take the pain for Ashlyn but we are grateful that she won't remember it. It was difficult to have to explain some of this to the older sisters as they are already concerned for Ashlyn (especially that she has to have some of her hair shaved off). The anxiety and sleepless nights have already begun and we are already praying for Dr. Fuchs and his team. Surgery is scheduled for April 11.

We are humbled by the continuation of prayers and support! Thank you, thank you, thank you! We are truly grateful!