Patient Stories

Pediatric Neurosurgery Story Book (pdf version - html version)

Stories From Alex - Callie - Jake - Sam and their families.

Throughout this Story Book are excerpts from interviews conducted with the families of four patients. Callie is now seven years old and we learn of her story through her mother, Maura. Ten year old Alex’s story comes from both his own words via passages, printed as submitted, from an autobiography he wrote as an assignment for his fourth grade teacher, and from a discussion with his mother, Laurie. Jake’s mother, Moira, felt that by telling us the journey of her now ten year old son, she was in some small way saying thank you to the people who gave her child’s life back to her. Sixteen year old Sam and his parents, Michael and Penney, recount the circumstances which brought themfrom an excellent community hospital to MassGeneral Hospital for Children. We are grateful to our patients and their families for their willingness to share their experiences with others.

The illustrations in this Story Book were created
by Alex Taylor as a part of his autobiography.
Our Friends & Story Contributors
The following clinical profiles provide more detail about Callie, Alex, Jake and Sam and the care they received at MassGeneral Hospital for Children.
Callie
Callie presented at age four years with a several day history of increasing headache, nausea, and drowsiness. A CT scan showed severe hydrocephalus secondary to a pineal gland tumor. An emergency shunt operation was done to relieve the raised intracranial pressure. The following week her benign pineal tumor was successfully removed in a six-hour operation. She has since then remained a normal, energetic child with no evidence of further difficulty on careful follow-up.

...read more on Callie's story...

Jake

Jake presented at age 7 years old with severe, intractable seizures. He had a congenital left hemiparesis likely as the result of some perinatal/intrauterine insult. This left him with little or no useful movement of the left hand or arm, a weak left leg and a left homonymous hemianopsia. Nevertheless, he was able to run, attend school, play with his friends etc.

Video/EEG monitoring captured numerous seizures with a presumed right sided onset but these were poorly localized. MRI demonstrated a large porencephalic cyst and gliosis throughout the right hemisphere.

Jake had a large subdural grid of subdural electrodes implanted into his head over the right hemisphere to more accurately determine where the seizures began. The invasive EEG studies demonstrated seizure onset from the scarred cortex surrounding the cyst. We therefore performed a right functional hemispherectomy. He has done extremely well since surgery with no new neurological deficits. He has remained seizure free and is back at school and sports. He recently graduated from third grade with improved grades and is active in tennis, swimming and soccer.

...read more on Jake's story...
Alex Art 1Alex
Alex presented at age 8 with 3 months of progressively intense nausea and vomiting. Evaluation by blood test, abdominal CT, and endoscopy of his gastrointestinal tract however showed no abnormality. However when he developed headaches his doctors ordered a head CT scan, followed by an MRI. These studies showed a large tumor in the IVth ventricle, causing compression on neurological vomiting centers of the brainstem. His doctors then referred him to the Pediatric Neurooncology Center at MassGeneral Hospital for Children.

...read more on Alex's story...

Sam
Sam presented at age 16 with vomiting for two weeks. He was admitted to North Shore Children’s Hospital where his pediatrician realized that this was something more than the usual gastrointestinal illness. A CT scan revealed a tumor in the back part of his brain (cerebellum) that would require surgery. He was transferred to the MassGeneral Hospital for Children where multiple MR scans showed that this was his only tumor. The next day he underwent 8 hours of surgery. There was no visible tumor at the end of the surgery and none on the MR scan that was performed the next day. He was discharged 5 days following surgery and returned to school within the week. Unfortunately, the pathologic/microscopic examination of the tumor showed that it is a type that has a high risk of recurrence so that additional radiation therapy and chemotherapy will be needed to reduce his risk of recurrence.

...read more on Sam's story...


Referrals

MassGeneral Hospital for Children is committed to making expert, state-of-the-art treatment available to children from across the community and beyond. The members of our network, which includes Newton-Wellesley and North Shore Children’s Hospitals, as well as hundreds of community pediatricians and pediatric specialists, work together to ensure that this goal is met.

Either families or physicians may make referrals to or inquiries about our Pediatric Neurosurgical Services by calling 617-726 3887.

Massachusetts General Hospital is consistently ranked among the top three hospitals in the country and its pediatric services in the top 1% in the nation by U.S. News & World Report Annual Guide to America’s Best Hospitals.We were the first hospital in the nation to attain Level 1 verification in Adult Trauma, Pediatric Trauma and Adult Burn. Our Brain Tumor Center receives referrals from medical centers around the world to care for children whose care is most challenging.



MGH Pediatric Neurosurgical Servicer - Wang Ambulatory Care Center - ACC-331 - Neurosurgical Service - Phone: 617-643-9175 - Fax: 617-726-7546 - Massachusetts General Hospital - 15 Parkman Street - Boston, Massachusetts 02114