Jim Schaeffer’s Story

Jim Schaeffer’s Story

On July 30, 2011 I was in a bicycle accident in Malibu. I was riding downhill and hit gravel at 40mph. I fell with the bicycle and landed on my right side and hit the back of my head. I was taken to UCLA hospital by helicopter. After a CT scan, emergency brain surgery was performed to remove the left bone flap to reduce the pressure inside the skull and allow my brain to swell without causing further damage. I had a subdural hematoma, and lesions to the left frontal and parietal lobes of my brain. I spent the next two weeks recovering in UCLA.

On August 12, 2011, I was transferred from UCLA Hospital to Casa Colina Rehab in Pomona. The goal was for me to get stronger and more stable. At the time of the transfer to Casa Colina I was able to walk, to use all parts of my body, and to speak. I had aphasia and was still stuck on work mode, but I was improving. At Casa Colina I was initially stable but then I began to rapidly decline. The cause of my decline could not be identified. I essentially became paralyzed on the right side of my body, I was wheel-chair bound, unable to speak clearly and very agitated. During this time, my skull began to sink in and I had a significant sunken bone defect. Essentially the left side of my head was very caved in. Eventually on September 27, Casa Colina sent me back to the Intensive Care Unit at UCLA because they could not identify why I was declining. They thought it was seizure related.

During the next three weeks at UCLA for the second time, I continued to decline. The doctors were confused and the only possible explanation they could come up with to explain my decline was that I was having continuous, subclinical seizures that were paralyzing my right side and causing my cognition to decline.  They diagnosed me with a seizure disorder called Todd’s Paralysis, put me on four seizure medications and sent me to UCLA Rehab in the hope of me improving. They did not think there was any more medical intervention that could help me.  

At UCLA Rehab I was under the care of an amazing doctor, Dr. Alexander. During this time my wife and daughters began noticing that the doctors’ preliminary diagnoses were inconsistent with my symptoms. My family noticed that my cognition and physical conditions correlated with my position. I was able to move my right side and speak clearly when I was lying down in a flat position. As I sat up or tried to stand up, my right side shut down and my ability to communicate declined.  My family also noticed that my skull defect was becoming more severe. They did some research and found a condition called Motor Trephine Syndrome.  Motor Trephine Syndrome or “sinking skin flap syndrome” is an unusual syndrome in which neurological deterioration and, sometimes, reversible paralysis occurs following the removal of a large skull bone flap. The neurological status of the patient can occasionally be strongly related to posture, as was my case. Once the doctors agreed that I had this syndrome, the surgeon replaced my bone flap earlier than planned. My bone flap had been stored in a freezer at UCLA Hospital.