Donovan's story

When Donovan was 4 years old, his parents were told that he had Chiari malformation 1 and a small syrinx (fluid-filled cavity) in the cervical portion of his spine. Donovan had special needs and was non-verbal, so they had always needed to watch his behavior closely to know when he needed something or was in pain. Learning about this condition put them in a whole new territory of parenting.

The first neurosurgeon they saw reviewed the MRI and recommended that Donovan go through a full decompression brain surgery. For his parents, hearing the words "brain surgery" was a very scary thing and to have them associated with their child was even worse.

They went home to start reading more about the condition and to search for the very best doctor for their son. That’s when they found Dr. John Ruge. At their first appointment, they were impressed not only by his knowledge about the condition but by his manner. He listened carefully, answered all their questions, and explained the risks and potential complications of the surgery. More importantly, he really seemed to care about what was happening to Donovan and their family. He also respected the fact that that they were hesitant to put Donovan through such an invasive surgery. Since Donovan wasn’t in pain, Dr. Ruge recommended a period of watchful waiting and monitoring with MRIs.

For several months, the scans showed the syrinx was slowly growing but Donovan’s symptoms hadn’t changed. Then Donovan woke up one morning and his left arm was hanging limp at his side. He couldn’t move it and he couldn’t use his hand or his fingers. And he was having trouble using his left foot.

His parents called Dr. Ruge right away and told him what was happening. Dr. Ruge quickly scheduled Donovan for surgery. He performed a posterior fossa decompression, a laminectomy of the C1 and a duraplasty.

Donovan was in pain the first couple of days after the surgery. But on the third day, his mother was sitting at his bedside holding his left hand and talking to him when he squeezed her hand and moved his arm. At that moment she felt Donovan was going to eventually be ok.

Donovan quickly started to recover. He experienced no complications, he had no infections, and within 2 months he had full use of his arm, hand and fingers. He was walking steadily on his own. By 3 months after surgery, he was his old self again, running around and playing.

Over the course of Donovan’s life, his parents have learned that his having a Chiari malformation will mean a long-term journey of watching his behavior, monitoring with regular MRIs and consulting with their doctor. They are grateful for Dr. Ruge's expertise and his trust in their parental instincts.