Neurology and Neurosurgery Patient Stories

Parents to 4-year-old Carter could never have known that a bump to his head during T-ball would lead to an unexpected discovery—a rare brain tumor.
Preschooler thrives after a T-ball hit saves his life >

Hemispherotomy is a complex brain surgery that was performed on Ozzy, a 7-year-old boy who suffered from severe epilepsy. After surgery, Ozzy was so excited by all the input. His mind was working so much faster, and he couldn't stop talking and asking questions. He embraces the world in a way he never could before.
Living a whole life with half a brain >

When Isabella developed a complicated case of cancer, her doctors at Stanford Medicine Children’s Health banded together to meet a spunky young girl’s special needs.
Saving Isabella’s brain—and her spirit >

Alex’s disabling and intensifying frontal-lobe seizures didn’t respond to medications, a therapeutic diet, or other treatments. New imaging, navigation tools, and robotic technologies allowed the Lucile Packard Children’s Hospital Stanford surgical team to precisely locate, analyze, and remove the brain lesion that was causing his seizures. Today Alex is seizure free, back in school, and feeling fine.
Alex: 10 Seizures: 0 >

An ENT surgeon and neurosurgeon teamed up to remove a nasal dermoid cyst that had extensions reaching into a 10-month-old patient’s skull. The procedure they used, which is conducted through the nose, is rarely done on children younger than 2 years old. Avoiding a craniotomy—the usual approach in patients that young—minimized risk, made recovery quicker and easier, and opened a new treatment frontier for such patients.
Pushing the Limits for Patients >

A rare condition called craniosynostosis causes the sutures that usually allow the pieces of a baby’s skull to grow properly to fuse together early. The disease causes a misshapen head and potentially dangerous complications from pressure growing inside the skull as a baby matures. For one craniosynostosis patient, Nazir, the diagnosis came much later than usual. Working in close collaboration, a pediatric neurosurgeon and a craniofacial surgeon carefully restored Nazir’s natural skull shape and size and inserted absorbable plates and bone grafts that will make space as his brain grows normally.
Snapshot Reveals Rare Skull Condition in Toddler >

In ROSA™, Brynn, a 7-year-old medically resistant epilepsy patient, had a staunch robotic ally. By enabling the safe and precise placement of stereo EEG electrodes, ROSA™ paved the way for the safest and least invasive approach to the walnut-size, seizure-causing lesion in Brynn’s brain. Once her brain was precisely mapped, neurosurgeons were able to quell Brynn’s seizures by destroying the deeply buried lesion with a laser.
ROSA™ and Minimally Invasive Brain Surgery May Cure Epilepsy >

When three-year-old Ari was diagnosed with a dangerous, deep, and fast-growing tumor entangling essential parts of his brain, his parents chose Stanford Medicine Children's Health because of its expertise at approaching such tumors minimally invasively, through the nose and skull base. Most surgeons wouldn't even consider that approach for a child Ari's size, but our experienced pediatric neurosurgery team was hopeful and eager to succeed. Today, Ari is bright, happy, and healthy and he loves to play any game involving balls.
Groundbreaking Minimally Invasive Brain Surgery - Gordy Slack >

Tuberous sclerosis complex (TSC) is a genetic disorder causing the growth of tumors in many different organs, including the brain, where they can prompt debilitating seizures that can arrest development. Young TSC patient Hadlee Steben was having as many as 20 seizures a day when her pediatrician in Wyoming gave her a referral to Stanford Medicine Children’s Health’s TSC specialist, pediatric epileptologist Brenda Porter, MD. Two brain surgeries later, Hadlee’s seizures have abated, and she’s making great strides in language development and other essential areas.
Hadlee’s Tuberous Sclerosis Complex (TSC) Story >

Jeremiah Humann was nearly 3 years old before an MRI finally explained his headaches, frequent vomiting, slow growth, and other intensifying symptoms. He had Chiari malformation, a neurological disorder that puts dangerous pressure on the cerebellum and spinal cord and impedes the normal flow of cerebrospinal fluid. Jeremiah’s mother, a health care provider herself, zeroed in on Lucile Packard Children’s Hospital Stanford’s program, which stresses both surgical excellence and a whole-child team approach to treatment.
Difficult to Diagnose, Treating Chiari Malformation >

By precisely guiding electrodes deep into Gracin’s brain, pediatric neurosurgeons and pediatric neurologists were able to determine the exact location of the dozens of daily seizures causing the 3-year-old child’s cognitive decline. The high-resolution data they got from the electrodes, known as a stereo EEG, showed that Gracin’s benign tumors were adjacent to her brain’s language center, not in it. Knowing that they could surgically remove them without compromising her language use, our neurosurgeons were able to resect the tumors and smooth the way for Gracin’s full language development.
Now Seizure Free, Gracin Gets Her Words Back >

The Stanford Clinical Genomics Program helps families and their medical teams zero in on the genetic causes of some disorders, such as the siblings Tessa and Colton’s relentless childhood seizures. Employing whole-exome sequencing, which focuses on those protein-coding genes most often implicated in human disease, the multidisciplinary team is also identifying new genetic diseases and syndromes, and helping clinicians develop and deploy the best available treatments to ameliorate them.
Tessa’s Mystery Condition Gets a Diagnosis >

Zoe was born with spinal muscular atrophy type 1, or SMA-1, a rare degenerative genetic neuromuscular disease. By the time she was 6 months old, her breath was weakening, and she could hardly move her lower extremities or her arms above the elbows. Most children with SMA-1 die before they turn 2, but with the Neuromuscular Disorders Clinic at Lucile Packard Children’s Hospital Stanford on her side, Zoe took a different path. At 3 years old, she could talk, move her arms and legs, and play with a ball.
Spinal Muscular Atrophy Awareness Month >

The same day they noticed that 2-month-old Bobby’s eyes weren’t tracking normally, his parents were seen by their Stanford Medicine Children’s Health Pediatrics – Monterey pediatrician. With Bobby and his parents in the exam room, the pediatrician consulted his neurologist colleague at Lucile Packard Children’s Hospital Stanford. Based on that exam, Bobby’s parents drove him straight to Stanford, where they were immediately ushered to an MRI, which revealed an arachnoid cyst growing right up against Bobby’s pituitary gland. The cyst, which was putting pressure on the pituitary and the optic nerve, could soon have caused blindness or, worse, his breathing to stop. A quick and successful resection of the cyst left Bobby in great shape, a testament to seamless coordinated care, from the local pediatrician’s office in Monterey to world-class pediatric neurosurgery.
Seamless Care From Monterey to Palo Alto Saves Baby With Brain Cyst >

Soon after she was born, Zoe Harting was diagnosed with a rare genetic disease called spinal muscular atrophy type 1. The prognosis was brutal; most infants with the disease do not live past the age of 2. Treated by pediatric neurologist John Day, MD, PhD, Zoe was the first baby ever to be given nusinersen, an experimental drug that corrects the underlying genetic mutation. The results were astonishing. If babies start receiving the drug early, before they become symptomatic, “we can be optimistic that it will effectively cure them,” says Dr. Day.
Infant at Stanford First to Get Drug for Deadly Neurodegenerative Disease >

One-year-old Evan Loh was living in Shanghai, China, when he was diagnosed with medulloblastoma, a serious brain cancer. After removing Evan’s tumor, his local oncologist prescribed radiation therapy to destroy any remaining cancer cells. Radiation, however, can sometimes also damage the sensitive healthy brain tissue in infant patients. So, instead, the Lohs traveled more than 6,000 miles to Lucile Packard Children’s Hospital Stanford for an innovative, yearlong chemotherapy program that allowed Evan to avoid radiation and its potentially harmful side effects. Now living back in China, Evan looks forward to annual reunions and checkups with his Packard Children’s neuro-oncology team.
After Radiation-Free Treatment for Their Son’s Brain Cancer, Family Travels 6,100 Miles Every Year to Reunite With Their Care Team at Packard Children’s >