Hershel's Story: Finding Hope While Treating Brain Tumors That Cause Epileptic Seizures
Hershel Haim has always been a healthy child. But when he was 13 years old, he began experiencing strange behaviors that he could not control.
They happened sporadically.
“I felt like I lost complete control of my body for a brief moment,” Hershel said. “It was just the strangest thing. I felt disassociated from the world around me. I just couldn’t control what my body was doing.”
Hershel recalls a time at home when he couldn’t stop himself from opening and closing the door. He’d open and close it many times, and his mother had to reach over and physically stop him from doing it.
Or when he was in band practice with 40 of his classmates – when out of nowhere – he began rocking his music stand back and forth repeatedly. The band director came up to him to make him stop.
“I had multiple episodes like that at school which was super embarrassing,” Hershel said. “I would bang my phone on my desk or abruptly pound my fist on the table during lunch period, and I didn’t know I was doing this. A few seconds later, I realized what happened after seeing my classmates mimicking my behavior and laughing at me with their friends. To me, it felt like everyone thought I was just weird.”
After these episodes happened a few more times, Hershel’s parents scheduled a visit with a pediatric neurologist. They soon realized their son’s bizarre behaviors resulted from seizures in his brain.
Symptoms of Epilepsy
Hershel had epilepsy, a disorder in which nerve cell activity in the brain is disturbed, causing seizures. The brain transmits electrical signals through the nerves to the muscles to control body movements. Seizures occur when abnormal signals from the brain change the way the body normally functions.
Seizures differ from person to person and can take many forms, depending on what part of the brain has been impacted.
Some people may lose consciousness, while others may have slight shaking. Partial seizures affect part of the brain, while generalized seizures affect the whole brain.
If medication cannot control seizures, surgical treatment may be recommended. According to the Epilepsy Foundation, approximately 470,000 children in the U.S. under 14 have epilepsy.
Living with Epilepsy as a Teen
Hershel’s epileptic seizures happened on and off and more frequently. He had partial complex seizures that impacted only part of his brain – but epilepsy affected virtually every aspect of his daily life.
“I would have seizures once every week, initially, and then the seizures would happen more often,” said Hershel. “It kept going on in school, which was extremely embarrassing. When my pediatric neurologist prescribed medicine to control my seizures, it definitely helped but not 100 percent of the time. Since the smaller doses weren’t working, my doctor bumped up my dosage from 200 to 800 milligrams. That helped me to some degree. I knew if I didn’t take the medicine, I would definitely have more seizures.”
Hershel learned how to deal with his seizures. He focused on the things that made him happy.
“I would hit the gym two hours every day,” said Hershel. “Working out at the gym and hanging out with my gym partners helped me get my mind off my epilepsy and made me feel somewhat normal again.”
Getting to the root of the problem
When Hershel was 15 years old, he began having severe headaches that didn’t seem to go away. His parents thought he was tired and needed more sleep and rest.
When that didn’t work, he and his parents grew more concerned. When Hershel’s pediatric neurologist retired, he was referred to another neurologist who ordered an MRI.
“I had been working out about two or three years, so going to the gym was a usual thing for me. So, I got my MRI done,” Hershel said. Then, a few days later, I remember my parents telling me, ‘Son, we are going to see the man who will interpret your MRI results. He is going to tell us how it went.’ That was a day I will never forget.”
After reviewing the MRI results, Dr. Lee told the Haim family that Hershel likely had a oligodendroglioma tumor in the right frontal lobe of his brain.
The tumor was not a brain cancer tumor but was probably the cause of Hershel’s epilepsy. The tumor needed to be surgically removed.
“Dr. Lee explained to me the tumor wasn’t cancerous, and it was in the frontal region of my brain, which is a rather silent area of the brain, so it wasn’t going to affect my memory, abilities or personality,” Hershel said. “But still, the news broke my heart. I tried really hard to hold back my tears because I am not the type who cries. I felt bad because it seemed like my life was basically slipping slowly away from me.”
Up until that point, Hershel only had electroencephalograms, which records the electrical activity of the brain via electrodes affixed to the scalp. EEG results show changes in brain activity that may be useful in diagnosing epilepsy and other seizure disorders.
“When I met Dr. Lee, he calmed me down,” Hershel said. “He was a good presence to have in the room. I was in a hopeful mood after our meeting. I was glad the MRI helped us get to the root of the problem.”
Surgery to Remove the Brain Tumor
On Sept. 6, 2022, Dr. Lee performed a complete resection of the 3-inch tumor and surrounding epileptic scar tissue in the right frontal lobe of Hershel’s brain. The procedure involved making an incision in the scalp and removing a piece of bone from the skull to access the tumor. A few hours later, Dr. Lee successfully removed the growth.
Since his surgery, Hershel has stopped having seizures. Dr. Lee says if this holds up for one year, Hershel will no longer require medication for his epilepsy – which is a win-win for this college-bound student. “It feels weird not to have seizures,” said Hershel. “The recovery was the difficult part for me. It was hard for me to stay idle in bed since I am a physically active person. It took me about two weeks to recover. When Dr. Lee told me I could resume non-contact sports, return to the gym, and go back to school on half-day increments two weeks after my surgery, that was the happiest I felt in a long time.”
A promising future ahead
With his seizures behind him, Hershel is finishing up his senior year of high school and setting his sights on applying to colleges, and he has several on his list including UT Austin, TCU, and Boston University.
“I have so much to look forward to,” Hershel said. “I can’t thank Dr. Lee enough for changing my life for the better. When I had seizures, I couldn’t hide it from anybody. I wasn’t really comfortable about telling a lot of people. I had seizures up until the day of my surgery, but I did not let it bother me. Whenever I had a seizure, I would tell my friends, ‘Hey, sorry about that. I have epilepsy.’ For families struggling with the challenges of epilepsy, my best advice to them is this:
“Be patient, stay positive even when it’s tough, and remember that an epilepsy diagnosis is not the end of the world. There are people out there, like your doctors, family, and friends, who will support you.”
CHRISTUS Genetics Clinic
CHRISTUS Children's has a monthly Prader-Willi syndrome multidisciplinary clinic based in San Antonio, Texas. If you or your child has a confirmed diagnosis of Prader-Willi, you can be referred to the clinic to receive coordinated care from our experienced specialists, including geneticists, ENT doctors, endocrinologists, pulmonologists, sleep medicine specialists, psychologists, dietitians, social workers, and speech pathologists.