Derek’s Story: A Landmark Procedure

Derek Young looked like any other baby when he was born in February 1994. But 3-1/2 months later, his mother Pamela noticed his head was slowly getting larger. Doctors diagnosed hydrocephalus, or fluid on the brain, and placed a shunt to drain the fluid. Fast forward 10 years when Derek needed a shunt revision. He was treated at the CHOC Children’s Neuroscience Institute and released.

CHOC Children's Neuroscience Institute

However, six months later, Derek returned to CHOC with what appeared to be a failure of the original shunt. Neurosurgeon Dr. Michael Muhonen decided to perform a pioneering procedure called a third ventriculostomy in which he made a tiny hole in the wall of the third ventricle of the brain — allowing movement of fluid out of the blocked ventricle.

As a result of this extraordinary surgery, Derek no longer required a shunt nor did he or his mother need to live in constant fear of shunt failure. An avid swimmer, this procedure allowed him to continue to pursue his passion, including completing a Catalina-to-Long-Beach swim to raise money for CHOC.

Derek is now a 6’2” 20-year-old junior at Northern Arizona University studying to be an emergency room or intensive care unit nurse, a career directly inspired from his experience with CHOC. From the compassionate, skilled nurses who made him laugh to the expert, encouraging doctors who described the procedure in terms he could understand, Derek’s experience with CHOC was life-changing.

Learn more about CHOC Children’s Neuroscience Institute.

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Meet Dr. Muhonen

Dr. Michael Muhonen, neurosurgeon and medical director of the CHOC Children’s Neuroscience Institute, strives to make sure that his team is always ready to employ the most innovative techniques using state-of-the-art equipment. His goal is to use non-invasive procedures, and, in cases where standard therapies aren’t available, to pioneer new ones, focusing on optimizing patient outcomes from surgery.

“There is less trauma to normal tissue when we can remove a three-inch tumor from a one-inch opening instead of a seven-inch opening,” explains Dr. Muhonen. “This is accomplished by aggressively using brain endoscopes and the newest stereotactic devices. We are also developing techniques to make incisions in the eyebrow, and to work under and around the brain rather than through it. We do everything we can to minimize pain, recovery time and physical evidence of surgery.”

Dr. Muhonen

But along with leading-edge surgical techniques and innovative procedures come compassion and empathy for each of Dr. Muhonen’s patients and their families. After all, he’s not just a world-class neurosurgeon, he’s also a father. When a child comes under his care, he does whatever it takes to reassure the parents that their child is in good hands.

“I strive to treat my patients and their parents as though they were my own family,” says Dr. Muhonen. “They have easy access to my cell phone and pager numbers so they have a ‘security blanket.’ At CHOC, we are all part of one big family.”

And Dr. Muhonen and his colleagues wouldn’t have it any other way.

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Kara’s Story: A Journey with Epilepsy

Heidi Sexton knew her young epileptic daughter, Kara, needed more help. Anti-seizure medications didn’t help, hospital visits were frequent, and seizures and tantrums continued.

“It was time,” Heidi recalled. “I went in to the next doctor’s appointment with my questions: What else can we try? This isn’t working.”

Dr. Mary Zupanc, director of CHOC Children’s comprehensive epilepsy program, offered her recommendation: Kara needs brain surgery.

A little girl’s long road

Though no doubt a staggering consideration, brain surgery would be the next landmark on a long medical history that belied Kara’s short three years of life.

At just 13 months old, she underwent emergency brain surgery after her frontal lobe hemorrhaged, caused by a previously undiscovered vascular malformation. The hemorrhage in Kara’s brain led to right-side hemiplegia, leaving her no use of her right hand and limited the use her right leg.

Kara underwent physical therapy and began walking at age 2. Life was relatively normal for the Sexton family until just after Kara’s third birthday, when she began acting strangely.

Kara’s body would stiffen, she’d fall down and stare off into space, Heidi recalled. It wasn’t until a visit to the Julia and George Argyros Emergency Department at CHOC Children’s Hospital that the Sextons would learn Kara was having seizures.

At the CHOC Children’s Neuroscience Institute, Kara underwent an electroencephalogram, or EEG, a test that monitors for electrical activity in the brain. Next, she spent six days undergoing long-term video EEG monitoring. From there, Dr. Zupanc, also CHOC’s neurology division chair, made an official diagnosis of epilepsy and prescribed an anti-epileptic medication.

Exploring other options

Nonetheless, Kara’s seizures continued. Kara’s three older siblings were acutely aware of their sister’s disorder, daily counting Kara’s seizures and agonizing over each hospital visit. The family began to placate Kara in hopes of staving off outbursts and tantrums, Heidi said.

“Kara had between two and four seizures a day,” she said. “It really messed with her behaviorally. She’s a lovely kid, but she suffered serious temper tantrums. It was physically and emotionally exhausting.”

A second six-day monitoring session led Dr. Zupanc to change Kara’s medication and, as a precaution, begin evaluating her as a candidate for epilepsy brain surgery.

Further tests and scans revealed that the left hemisphere of Kara’s brain was significantly injured and atrophied – likely related to her earlier hemorrhage. In addition, Kara’s new anti-epileptic medication wasn’t working.

Dr. Zupanc concluded that the next step was a hemispherectomy, a surgical procedure in which one side of the brain is removed or disconnected.

Kara

“On scans, Kara’s hemisphere was completely white,” Heidi said. “The only thing her left hemisphere was doing was causing seizures. There was no question.”

A change of course

Nearly 11 months after the seizures first surfaced, Kara underwent surgery at CHOC to remove a portion of her brain’s left side, and disconnect the remaining portion from the right hemisphere. Performed by neurosurgeon Dr. Joffre Olaya, the procedure lasted six hours.

After 16 days recovering in the hospital’s pediatric intensive care unit, Kara went home just after her fourth birthday.

Much to her parents’ and siblings’ relief, Kara hasn’t had a seizure since her surgery eight months ago. Kara still relies on an anti-epileptic medication, but she may be able to stop taking it completely or use a lower dose of medication soon if her progress continues.

Though considering a second brain surgery was daunting for the Sextons, Heidi and her husband knew the procedure was the right choice to help their daughter.

“I looked at it in a sense of quality of life for Kara,” Heidi said. “Hopefully now she’ll be able to drive one day. Continued seizures would have impaired her cognitively forever, and I didn’t want that.”

Though she still requires extensive care, Kara is doing well physically and emotionally and is looking forward to preschool.

Kara isn’t fully aware of her journey in the last year, but she understands the meaning of the scar on her head just above her ear.

“She knows now that she doesn’t have seizures and Dr. Olaya and Dr. Zupanc fixed her,” Heidi said.

Read other stories about CHOC patients:

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    As it celebrates its 25th anniversary, CHOC “Walk in the Park” has raised more than $24 million to fund education, research and adoption and utilization of the latest technologies to ...
  • A Bright Future: Ian and Micah’s Story
    Even though I’ve been hanging around CHOC Children’s for a long time now, I am continually surprised by the courage, tenacity and strength of the patients I meet. It’s especially ...

 

Celebrate Doctor’s Day – Dr. Michael Muhonen

In honor of Doctor’s Day – March 30th –  we’ve been highlighting some of our doctors throughout the month of March! Check out this video with Dr. Muhonen, Medical Director of the CHOC Children’s Neuroscience Institute and Director of Neurosurgery, who shares what he is most excited about in The Bill Holmes Tower at CHOC Children’s.

Thank you Dr. Muhonen, and all of our CHOC doctors, for your dedication and commitment to the patients and families we serve!

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Magnet Magic

Using magnets to treat babies and kids with hydrocephalus sounds like something from a science-fiction movie, but it’s happening here at CHOC Children’s.

Hydrocephalus (or water on the brain) is a condition where there is a lack of absorption, blockage of flow, or overproduction of the cerebral spinal fluid (CSF) that surrounds the brain.  This can lead to dangerous buildup of fluid, increasing pressure inside of the head.

Some hydrocephalus patients need surgery, which usually involves placing a shunt into the child’s head to help drain the extra fluid from around the brain.

CHOC neurosurgeon Michael Muhonen, MD, was a primary investigator for clinical trials of Medtronic’s Strata Valve—part of a shunt system now being used worldwide to treat hydrocephalus.

Dr. Muhonen

Once surgically implanted in the brain, the settings on adjustable valves like Strata can be easily customized as the patient grows and changes. Dr. Muhonen uses a special magnet to change pressure settings in the shunt from outside the head. It’s noninvasive and totally pain-free.

Want to learn more about hydrocephalous and treatment options? Visit the CHOC Children’s Neuroscience Institute web site.

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