Robert’s Story

Site created on May 31, 2018

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Journal entry by Cynthia Boone

On May 14th Robert had an MRI because he had been experiencing migraine like headaches, that were getting worse and more frequent. We expected nothing to show up because of the family history of migraines, but instead the tech came out to ask if they could add contrast because they thought they could see something. They added contrast and then we were told that the pediatrician would be calling with results before we left the hospital. 

He called and told us that Robert had an AVM and he was referring us to Pediatric Neurosurgery. We met with the head of Neurosurgery for Akron Children's the following week. We decided to get a second opinion on advice of our pediatrician. We met with Dr. Mark Bain at Cleveland Clinic on the 24th. He answered a lot of questions and told us to do our research and let him know how we wanted to proceed. We found out later that he is one of the best Neurosurgeons in the country for AVM's. He is also not a pediatric dr, so he doesn't often accept pediatric patients, but he was willing to take Robert.

So we decided to go back to Dr. Bain for the surgery. Robert is scheduled for his functional MRI on Thursday, June 7th. This is to see which side of Robert's brain holds his language. He is left handed, so there is a small chance that his language could be opposite what is most common. On June 20th Robert will go up for his pre-op appointment. 

June 25th he will have his angiogram and then he will return on that Thursday the 28th for his surgery. He is expected to remain in the hospital between 3-5 days. The rest of the family is hoping to stay at Ronald McDonald house in Cleveland to be closer to him. 
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