By: Byron

This is something I wrote for school and thought you might be interested in.


A hemispherectomy is a very complicated surgery. It is when half of your brain is taken out, and it is done for many reasons. I have had one, so I will explain to you everything that caused me to have a hemispherectomy. I will tell you my story and what led up to having one.

I was born a normal kid.  Well, almost normal. When I was four months old, I was diagnosed with Sturge-Weber Syndrome. Sturge-Weber Syndome is a neurological disorder that shows up as seizures because of restricted blood vessels in the brain, causing the brain to not get enough oxygen. You can also recognize it by birthmarks, or port wine stains, which are purplish, reddish bunches of blood vessels that are near the surface of the skin.  Like many other kids, I started having seizures on the left side of my brain. I was also born with a birthmark, or a port wine stain, on my left eye lid and forehead. Most people with Sturge-Weber have even more port wine stains than I do. Many people with Sturge-Weber need more medical care than I do, even though I have a lot of appointments for physical therapy, accupuncture, orthopedic, and my ankle-foot orthodics doctors. This Syndrome is one of the reasons why I had to have the massive brain surgery.  After I was born my right hand made a fist, and when I was first born my mom saw the port wine stain. I used to have laser treatments on the port wine stain, so it was a lot bigger than it is now. I was very lucky, though, because some people have it all over their faces and other parts of their bodies. At four months my mom was driving somewhere when she noticed in the mirror my pinky moving up and down continuously. She didn’t know what was going on. She started to get worried at this point. She called my pediatrician who told her to bring me in to the office. The next few days were very stressful. My mom, alongside my dad, went to Philadelphia where I was diagnosed with Sturge-Weber syndrome. Then they went up to Boston Children’s Hospital where they met with the doctor who would end up doing the hemispherectomy, but my dad and mom wanted more answers and referrals so the health insurance company sent my mom and dad on a private jet with me to UCLA where they met with another doctor.  The doctor there wasn’t as experienced as the one that they saw in Boston, so we flew back out to the east coast  where I had my surgery.

The surgery was to take out the side of the brain that was having the seizures. The seizures were effecting the left side of my brain. When my parents met on the pre- op day (which is the day before the surgery where they discuss what they are going to do the following day) the doctor told them that they are going to take out the left side where the seizures were going on. The day of the surgery I don’t remember, but I do know what has happened to the brain in the years since.  After I had the surgery, the right side of the brain developed fully. My brain has grown tissue to fill the empty space so that there it is no longer empty on the left side of the skull. In conclusion, even though my story is a very weird one, something that starts with a twitching of the pinky can end up with someone having to have a hemispherectomy.

I’ll write more about what I remember as a kid later.

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