Developmental (Pediatric) Neurosurgery - Information Links Link Disclaimer: "Links" are provided only as an informational resource as a "Patient-to-Patient" service. Please note that many of the links provided below are not on one of the MGH Neurosurgical Service servers and are not maintained by us or affiliated with any services provided by us.

General Pediatric Neurology Links:

• the MGH Neurology WebForum. (Select Review Child Neurology).
• Child-Neuro Links from the University of Wisconsin
• Agenesis of the Corpus Callosum (NINDS)

• Hydrocephalus Syringomyelia, Myelomeningocele Support Resources (addresses, telephones, and descriptions)
• Hydrocephalus Association on-line information
  • Hydrocephalus Fact Sheet
• HYCEPH-L an email discussion group devoted to hydrocephalus.
• History of the first successful treatment of hydrocephalus by endoscopic third ventriculostomy at MGH.
• Normal Pressure Hydrocephalus (characterized by the triad of gait instability, urinary incontinence, dementia) at MGH
• Yahoo's Hydrocephalus Links Page
• Stephen Drake's Hydrocephalus Homepage
• Adult-Onset Hydrocephalus from the (US) National Institutes of Neurological Disorders and Stroke
• Childhood Hydrocephalus from the (US) National Institutes of Neurological Disorders and Stroke
• Pseudotumor Cerebri from the (US) National Institutes of Neurological Disorders and Stroke
• The Spina Bifida Association of Nova Scotia : About Hydrocephalus

• Spina Bifida Association of America 800-621-3141
  • SBAA's Introduction to spina bifida
• Children with Spina Bifida A Resource Guide for Parents
• The Usenet Newsgroup alt.support.spina-bifida
• The Spina Bifida Association of Nova Scotia
  • SBANS' Information About Spina Bifida
• The Spina Bifida Association of America
• Lumps, Bumps, and Holes: A Primer on Occult Spinal Dysraphism by W. Jerry Oakes, MD, University of Alabama

• MGH Neurosurgeons with expertise in the treatment of Arnold Chiari malformation and syringomyelia
• World Arnold Chiari Malformation (ACM) Association Homepage
• Syringomyelia Facts (from dataprompt.com)
• Information on Syringomyelia from the (US) National Institutes of Neurological Disorders and Stroke
• Workshop Summary: Syringomyelia June 20-21, 1994 from the (US) National Institutes of Neurological Disorders and Stroke
• Chiari Malformation from the (US) National Institutes of Neurological Disorders and Stroke
• Dandy-Walker Syndrome from the (US) National Institutes of Neurological Disorders and Stroke

• MedWeb (Emory) disability resource index
• More Cool Disability Resources from Evan Kemp Associates
• Disability Resources (U Maryland)
• Galaxy Disability Resources Index and another Disability Index Homepage
• Resources for people with disabilities (gopher)
• A description of services offered via various on-line disability resources: Do-It
• Patient Advocacy Groups Help Line - toll free telephone numbers (from Johns Hopkins)
• My Handi-Capable Reporter A Newsletter with the motto,"Changing pessimism to optimism."

• MGH Neurosurgery's Brain Tumor Links (A more comprehensive list of on line resources related to pediatric and adult brain and spine tumors.)
• Brain Tumor Foundation of Canada's Pediatric Brain Tumor Patient Resource Book
• Oncolink (Upenn): Pediatric Brain Tumor Information
  • Surgical Complications in the Management of Pediatric Brain Tumors, by Leslie N. Sutton, MD
  • Pineoblastoma in Children by Joel W. Goldwein, et al.
• American Brain Tumor Association's Primer of Brain Tumors
• American Brain Tumor Association's Dictionary for Brain Tumor Patients
• American Brain Tumor Association's Tumors Metastatic to the Brain and Spine
• Cancer Net and PDQ are available directly from the National Cancer Institute (USA)
  • Childhood brain tumors: Patient/Family Information
  • Childhood brain tumors: Information for Physicians
  • Childhood brain stem glioma: Patient/Family Information
  • Childhood brain stem glioma: Information for Physicians
  • Childhood cerebellar astrocytoma: Patient/Family Information
  • Childhood cerebellar astrocytoma: Information for Physicians
  • Childhood cerebral astrocytoma: Patient/Family Information
  • Childhood cerebral astrocytoma: Information for Physicians
  • Childhood visual pathway glioma: Patient/Family Information
  • Childhood medulloblastoma: Patient Information
  • Childhood medulloblastoma: Information for Physicians
  • Childhood supratentorial primitive neuroectodermal tumor (PNET) and pineal tumor: Patient/ Family Information
  • Childhood supratentorial primitive neuroectodermal tumor (PNET) and pineal tumor: Information for Physicians
• Cerebral, cáncer: NIH PDQ Patient Information is also available in Spanish from Pregúntale a NOAH sobre el cáncer
  • de la niñez
  • Meduloblastoma infantil
  • Tumor neuroectodérmico supratentorial primitivo infantil
• Kids' Home at NCI
• The Childhood Brain Tumor Foundation Homepage
• MGH Neuro-oncology Information Resources
  • The New WHO Classification of Central Nervous System Tumors
  • Astrocytic Tumor Grading Systems
  • Mutations in Astrocytic Lineage Tumors
  • Acoustic neuroma and other cerebellopontineangle (cpa) and skull base tumors
  • Pituitary tumor (adenoma, carcinoma) information
  • Neurofibromatosis (type I, Von Recklinghausen's disease) information
  • Tuberous sclerosis resources
  • Von Hippel-Lindau disease resources
  • Spine tumor information
  • Molecular Neuro-oncology Laboratory Homepage: MGH Research elucidating the genetic bases of nervous system tumors

• Pediatric Pain email discussion group (mailing list)
• Other Chronic Pain Links

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