Brayden, Skyler and Zachary Wendorff

After coming home from Pre-K, Brayden fell to the ground with a severe headache. After two weeks of persistent headaches, his pediatrician ordered a CT scan of his brain.

Just two days later, Brayden was diagnosed with Chiari malformation, a serious neurological disorder where the bottom part of the brain, the cerebellum, descends out of the skull and crowds the spinal cord, putting pressure on both the brain and spine and causing a number of symptoms.

Referred to Dr. Ian Heger at the Lucy Gooding Center for Children’s Neurosurgery at Wolfson Children’s Hospital, Brayden had a series of MRIs that determined at that time that he was not a candidate for surgery. Brayden was referred to Neurology at the University of Florida Pediatric Clinic for treatment of his headaches. Over the course of the next 4-6 months, Brayden went from having headaches daily to loss of feeling in his arms and legs. His neurologist ordered a new MRI and a flow study and we were referred back to Dr. Heger’s office.

This time, Brayden’s Chiari had gotten worse and he needed surgery immediately.  Brayden underwent his first posterior fossa decompression and craniotomy on June 9, 2010. Dr. Heger took out Brayden’s 1st vertebrae, a portion of his skull, and fixed the dura (the protective layering of the brain).  Brayden recovered beautifully and we were home in 3 days. Over the course of the next month, Brayden’s symptoms returned and they were worse this time. Another MRI revealed the surgery was not successful and Brayden would require another surgery. So, Brayden underwent decompression #2. After surgery, Dr. Heger told us this procedure was much more successful, but they had to do quite a bit of work and recovery would be different this time. He warned us Brayden might get something called chemical meningitis in approximately 2 weeks and to be prepared for it. After 17 days, Brayden was released and continued to feel better each day.

After three months, Brayden continued to have severe headaches and was given a diagnosis of complex migraines.  After another MRI and EEG, the EEG showed slowing of the brain, and the MRI showed Brayden had suffered a stroke on the left side of his brain.

During Brayden’s hospitalization, our 8-year-old son Skyler was showing symptoms of Chiari and on December 28 we were given an official diagnosis. He has a 15mm herniation of the cerebellum, but is not a candidate for surgery, thankfully, at this time.

Upon our return from out of state, Brayden underwent another series of tests, and his results were sent to a doctor at Mayo Clinic Florida. Brayden’s doctors at Wolfson were informed that he was suffering from Moyamoya Disease, a vascular disease of the arteries of the brain. During these tests, our 4-year-old son Zachary was showing symptoms of Chiari malformation and a sister disease called syringomyelia.

Zachary was admitted to the hospital in early May and underwent an MRI of the brain, which confirmed Chiari malformation with a hermiation of 14.6 mm, Zachary had a spinal MRI, which showed syringomyelia from the c2 to c7 vertebrae. We saw Dr. Heger and discussed surgery options and dates for Zachary and another surgery for Brayden to correct his Moyamoya disease.

Brayden underwent a third brain surgery, where Dr. Ricardo Hanel took out a portion of the skull on the left side of his brain and placed his left temporal artery flat to the brain and then they shaved the piece of skull down to a smaller size and put it back in place.

A month later, Zachary underwent brain surgery for a Chiari decompression. Zachary has had a beautiful recovery and is now almost completely symptom-free, but still has some days where headaches get the better of him.

The Wendorffs feel they are treated like family and know they are in GREAT hands when they are at Wolfson Children’s Hospital.

Click Here to Donate