Other Hydrocephalus Links


 

Medical Centers & Doctors

The American Board of Pediatric Neurological Surgery Use this site to find out whether your neurosurgeon is a ABPNS diplomate, and learn about the criteria for certification.

Beth Israel Medical Center The INN’s official site provides general information about pediatric and adult neurosurgery, along with specific informantion on hydrocephalus and associated disorders.

The Adult Hydrocephalus Center at Sinai Hospital of Baltimore, part of The Sandra and Malcolm Berman Brain & Spine Institute, provides internationally recognized expertise in the diagnosis, treatment, and longitudinal care of adults with hydrocephalus, including pediatric hydrocephalus patients transitioning into adulthood. The team of experts, led by Michael A. Williams, MD, is actively involved in research, patient/family education, and patient advocacy efforts.

Carolina Neurosurgery & Spine Associates – Pediatric Neurosurgery This practice serves as a regional referral base for childhood neurosurgical problems, under the direction of pediatric neurosurgeons Scott McLanahan, M.D., Michael D. Heafner, Sr., M.D., and Martin M. Henegar, M.D.

The Children’s Brain Tumor Foundation Founded in 1988 by a group of dedicated parents, physicians and friends to improve the treatment, quality of life, and the long term outlook for children with brain and spinal cord tumors through research support, education, and advocacy to families and survivors.

Children’s Hospital of Atlanta This site presents an excellent overview of hydrocephalus diagnosis and treatment. The Neurosurgery Program is under the direction of Rodger Hudgins, M.D., a pediatric neurosurgeon.

Cleveland Clinic Hydrocephalus Project This site introduces hydrocephalus and describes the Cleveland Clinic Project, which is run by Mark Luciano, M.D., Ph.D.

Columbia Presbyterian Medical Center: Pediatric Neurosurgery This site provides basic information about hydrocephalus and describes services offered at CPMC, which is under the direction of pediatric neurosurgeon Neil Feldstein, M.D.

Hydro-KIDS This site sponsored by shunt manufacturer, Codman, is designed to be a comprehensive information source for kids, parents and caregivers about pediatric hydrocephalus (what it is, treatment, follow-up resources). Its also lots of fun and games around benny the Bear, one of the only bears with a shunt!

John Hopkins Hydrocephalus and IIH Center This site provides information about NPH and IIH as well as a description of the multi-disciplinary center and how to make an appointment.

Mayo Clinic Department of Neurosurgery This site features an overview of the clinic’s services, a list of doctors, an online appointment booking services, and more.

Rainbow Babies & Children’s Hospital The neurological surgery unit of Rainbow Babies and Children’s Hospital believes in delivering the most advanced care in the most compassionate setting for infants and children with nervous-system disorders.

Neurosurgery 4 Kids.net The official site of the Pediatric Neurosurgery Department of the University of Utah’s Primary Children’s Medical Center, run by Marion L. Walker, M.D., and John Kestle, M.D., provides excellent information about hydrocephalus, seizures, and other clinical topics.

Neurosurgeons for Kids The site of Orlando, Florida, neurosurgeon Eric R. Trumble provides information about hydrocephalus, patient information forms, and links to other resources.

St. Christopher’s Hospital for Children This site provides detailed information about hydrocephalus and shunts. The program is under the direction of Joseph H. Piatt, M.D.

UCLA Neurosurgery: Adult Hydrocephalus Program This site gives an excellent explanation of normal pressure hydrocephalus, its causes and its treatment. It also describes UCLA’s Adult Hydrocephalus Program, directed by Marvin Bergsneider, M.D.

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General Resources

California NeuroAlliance Survey: Make Your Voice Heard! If you’re affected by a neurological condition, we encourage you to go online and complete this survey. The information from this survey will help educate elected representatives in Sacramento, health care executives, and the public about the critical needs of people living with neurological conditions. You can help ensure that their decisions reflect your needs.

Children’s Hydrocephalus Support Group This new Pacific Northwest regional support group meets every other month in person. The Children’s Hydrocephalus Support Group was created to give parents of children with hydrocephalus an opportunity to learn from one another and become better advocates for our children through education about hydrocephalus, treatment, and therapies. It’s focused on parents and children, but adults are also welcome. This site also features an online support forum that you can join to get support from the group’s members, so you don’t need to reside in the Pacific Northwest to benefit from its activities. People from Virginia, Alaska, and Arizona, for example, are members of this group under its website’s “Support” area.

Dandy-Walker Alliance This alliance is an all-inclusive organization including people directly and indirectly affected by Dandy-Walker who share an interest in educational, informational activities and supporting nonpartisan research to increase public awareness Dandy-Walker syndrome.

FollowMe This site is a one-stop shop designed to help with web-based management of medical records. FollowMe is secure and user-friendly.

Hydrocephalus Clinical Research Network (HCRN) The Hydrocephalus Clinical Research Network (HCRN) has been established by philanthropic funding to conduct multi-institutional research (clinical trials and observational studies) on pediatric hydrocephalus.

The mission of the Hydrocephalus Clinical Research Network is to dramatically improve the lives of children suffering from hydrocephalus by conducting important, and field-changing, multi-center clinical research.

International Federation for Spina Bifida and Hydrocephalus The International Federation for Hydrocephalus and Spina Bifida (IF) is the worldwide umbrella organization (NGO) for hydrocephalus and spina bifida. It was established in 1979. Today the IF’s membership includes national umbrella organizations for hydrocephalus and spina bifida in over 40 countries.

Maternal Hydrocephalus This site presents the results of an ongoing study on pregnancy in women with shunts, and includes contact information for women wishing to become part of the study.

National Institutes of Health Hydrocephalus Links This list of hydrocephalus links is put together by the National Institutes of Health, in conjunction with Medline.

Neurosurgery://On-Call: Hydrocephalus FAQ This provides a list of frequently asked questions about hydrocephalus (and their answers), from the official site of the American Association of Neurological Surgeons and Congress of Neurological Surgeons.

Spina Bifida Association This site covers everything from vital information about the B-vitamin folic acid for women affected by a neural tube defect to information who might become pregnant, to strategies to help improve the quality of life for people living with spina bifida.

DrugWatch.com DrugWatch’s site features a comprehensive list of drugs and medications that are currently on the market, or were previously available worldwide.

Normal Pressure Hydrocephalus From Diagnosis to Treatment, Adam S. Mednick, M.D., Ph.D. In his new book, Dr. Adam Mednick, neurologist, draws from twenty years experience to provide concise information to help individuals understand how NPH is diagnosed and treated.

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Youth Links

Embedding Health Outcomes in the Individualized Education Program “Embedding Health Outcomes in the Individualized Education Program” is a 40-minute video recording that provides information and specific examples of health related goals for an IEP. This recording is available, at no cost, from the Wisconsin Department of Public Instruction web site.

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