Hi all.

I came across a heart breaking post on Facebook today, and I wanted to share it with you. When people say, “You don’t look sick”  I hope they keep this young man and his family in their mind.
Ryan’s Voice

“First let me tell you a little about my son Ryan. He was a wonderful kid with many hopes and dreams for the future. At 19 years old he started having severe headaches. He had never had chiari symptoms or even been sick before. Healthy and active we assumed he was spending too much time in front of the computer and maybe that was the reason for the headaches.

Then on May 12th 2013 ( mothers day) he woke up with what he described as the worst headache of his life. Later that day he vomited and passed out on the bathroom floor. We rushed him to our local University hospital and they diagnosed him with Chiari 1 and hydrocephalus. We were so scared. I knew nothing about Chiari and was horrified. They performed a Laminectomy and placed a vp shunt to drain his spinal fluid.

12 hours after surgery he went into cardiac arrest and had to be vented. Then he developed clots in his shunt. He was in ICU for 3 weeks. Finally he was well enough to go home. We thought the worst was over but it was just the beginning of this nightmare. Once home he began vomiting every time he tried to eat. The doctors told us it was nothing. That we were just worrying too much. They gave him Phenegren but it didn’t work. He just continued to vomit and get weaker.

Then in June he had his first seizure. We took him to the hospital ER 7 times in 6 weeks. He started having seizures everyday but the doctors insisted they were not seizures! In fact they kept telling us there was nothing wrong with Ryan, and that the surgery had been successful. When Ryan’s appointment came around in July they told us they didn’t take his insurance! I soon realized they were trying to cover something up.

The neurosurgeon was young and inexperienced in Chiari. She just used my son for practice. Ryan continued to get worse and we continued to beg the doctor and hospital for help. They got very annoyed every time we brought Ryan into the ER. We were desperate for help because by July, my son could no longer walk without having a seizure. He was defecating on himself, he had lost 30+ pounds and he had episodes of Decordicate Posturing..a sign of brain stem damage.

On August 29th after the neurosurgeon refused to see him claiming an insurance problem, we took him back to the ER. He was finger tapping and gritting his teeth constantly. He was having several seizures a day and started reverting back to childhood. He didn’t want me away from his side and was calling me mommy instead of mom.

In extreme pain, my son lay in the ER with me and his dad by his side for 12 hours. I begged them to do an mri and they refused. They told us, ”your son has no brain damage, he is just depressed. We will no longer treat him from a neurological standpoint.”

My husband and I were mortified! We knew if we didn’t get him out of there they would commit him to the psych ward! Ryan told me, “Mom, I’m dying. They don’t believe me.”

My husband snapped and went home and tried to kill himself. He had a complete mental breakdown.

I took Ryan out of there and straight to another hospital.

That is where my son died.

It was too late. His brain stem had collapsed, crushing his spinal column and rendered him brain dead. I was by his side when it happened.

I do have a lawsuit against the doctors and hospital who destroyed our lives and murdered my son.”

Ryan’s Voice, Facebook.


My heart breaks for this family. They have a Go Fund Me page to help cover the expenses of their great and unexpected loss. I hope this family’s story is able to reach others who aren’t or don’t take Chiari seriously. Please check out his mom’s blog Life on the waiting list