GOVERNMENT DOCUMENTS

1.) American Association of Neurological Surgeons. “An Integral Voice – 75 Years”. (2007.) http://www.aans.org/about/annualreport07.pdf

The American Association of Neurological Surgeons (AANS) is an organization that speaks for all of neurosurgery and is dedicated to the advancement of neurological surgery to promote high quality patient care. It has over 7,200 members worldwide. This document is the AANS Annual Report for 2007, which also marked their 75 year anniversary. It includes an updated plan from each of their officers, outlining advancements made and goals for the near future. It gives details of the research being conducted and a full list of all the donors from 2007. This is an important document because patients with Hydrocephalus want the best care and the best neurosurgeons they can find. The AANS makes sure that these neurosurgeons are available and making regular advancements.

 

2.) International Federation for Spina Bifida and Hydrocephalus. “ “Access” Activity Report 2006” (2007). http://www.ifglobal.org/uploads/documents/Annual%20report%202006-rev.pdf 

The “Access” Activity Report 2006 is a document presented at the General Meeting of the International Federation for Spina Bifida and Hydrocephalus. It includes the planned development for the corporation, goals, financial results of 2006, the IF Award of 2006, a full staff list and a letter from Pierre Mertens, President of the IF Network. This would be a helpful document to anyone looking to get involved with IF or that has been involved with IF in the past. It is a good document to look at IF’s past dealings and how it operates as a leading international corporation with Hydrocephalus.

PRINT REFERENCE BOOKS

1.) Parker, James N.; Parker, Philip M. “The Official Parent’s Sourcebook on Hydrocephalus”. (2002). Icon Health Publications: San Diego.

This is a sourcebook created for parents who have decided to make education and Internet-based research on Hydrocephalus an essential part of the treatment process. Although it gives information useful to health professionals such as doctors and caregivers, it also tells parents where and how to look for information covering virtually all topics related to Hydrocephalus, from the basics to the most advanced areas of research. The book uses resources from academic, public, government and peer-reviewed research. Also included are excerpts from readings of special agencies that have been reproduced to provide some of the latest official information available to date on Hydrocephalus.

 

2.) Chen, Harold. “Atlas of Genetic Diagnosis and Counseling”. (2006). Humana Press: Totowa, N.J.

The Atlas of Genetic Diagnosis and Counseling is a pictorial atlas of over 200 genetic syndromes and disorders. It provides an outline of what Hydrocephalus is describing genetics, defects, clinical features, tests, diagnosis, treatments, and counseling. It also includes photographs of ultrasounds and MRI scans from patients of all different ages and stages of the illness. The book is kind of intense and is mainly a good resource for those with a clinical degree.

 

 

INTERNATIONAL WEBSITES

1.) The International Federation for Spina Bifida and Hydrocephalus http://www.ifglobal.org/home.asp?lang=1&main=1

The International Federation for Spina Bifida and Hydrocephalus (IF) consists of 32 regional and national umbrella organizations in over 50 countries for the two illnesses. It’s goal is to provide information throughout the world to all parties involved: doctors, patients, families and volunteers. Their site includes an extremely in depth look at Hydrocephalus as well as the main treatments offered. It provides information on human rights and how the syndrome is affecting developing countries. The site comes in six different languages and also contains a newsroom and a forum.

 

2.) Hydrocephalus 2008 http://www.hydrocephalus2008.com/

Hydrocephalus 2008 is an event held in Hannover, Germany on September 17 – 20^th. The event is hosted by Carsten Wikkelsö, Gotebörg University. The event is held for professionals from all areas of Hydrocephalus to present up to date experimental and clinical research to improve everyone else’s understanding of the illness. This website gives program information, a way to submit a personal abstract, a way to register. It also provides a link to The International Society for Hydrocephalus and Cerebrospinal Fluid Disorders (ISHCSF) which is also a very informational organization.

SCHOLARLY ARTICLES

1.) Fichter, M.A. “Current Trends and Prospects of Intrauterine Neurosurgery”. Fetal Diagnosis & Therapy 23.4 (2008): 271-286.

Intrauterine surgery is a surgical performance done on the fetus while it is still within the womb. If Hydrocephalus can be diagnosed at this stage, an intrauterine surgery can be preformed to correct the syndrome, and prevent a shunt dependence later on in life. An estimated 330 cases of intrauterine repair have been performed in a few specialized centers worldwide. This would be a good source to find information regarding this type of surgery, and comparing whether or not it is an appropriate treatment for a specific case.

 

2.) Piatt, J.H.; Garton, H.J. “Clinical Diagnosis of Ventriculoperitoneal Sunt Failure Among Children with Hydrocephalus”. Pediatric Emergency Care 24.4 (Spring 2008): 201-10.

This journal was written after a study was done on the different symptoms and signs of shunt failure and infection. The study was randomized and consisted of controlled clinical trials. Observations were made and data was recorded. This type of journal is significant in that it is always important to research every treatment process available before having the procedure done. Although sometimes hard to understand, careful notes can be taken and asked to a physician who can always translate into layman’s terms.

 

3.) Levine, David N. “Intracranial Pressure and Ventricular Expansion in Hydrocephalus”. Journal of the Neurological Sciences 269.1 (Summer 2008): 1-11.

This article discusses the cause of Hydrocephalus and what causes the buildup of Cerebral Spinal Fluid (CSF) in the brain in the first place. The author proposes a theory that states Hydrocephalus is caused by the obstruction of the flow of CSF with the absence of large pressure gradients across the cerebral mantle. It goes on to explain how exactly the pressure is measured and how it is observed and recorded. This would be helpful mostly to doctors looking to expand their knowledge of the syndrome and also good for other clinical trials.

NEWS ARTICLES

1.) Morris, Sophie. “Hydrocephalus: the lethal brain condition.”  The Independent. Retrieved June 10, 2008. http://www.independent.co.uk/life-style/health-and-wellbeing/features/hydrocephalus-the-lethal-brain-condition-843399.html

This is an article following the life of Simon Lannon. He was diagnosed with Hydrocephalus at a young age and had his first surgery at age six. Since then he has had over 30 surgeries. The article goes through all the trials and tribulations of growing up and suffering from Hydrocephalus. Although Simon has missed a lot growing up because of this illness, the article goes on to describe how he is now training for a triathlon. The article is really inspiring and shows that one can really accomplish a lot in life while suffering from Hydrocephalus. It shows that life can still be successful and meaniful. Simon Lannon is an inspiration to all, not just those with Hydrocephalus, but any illness.

 

2.) Ishaq, Allia. “Pregnancy Problems and Cats: Few Facts, Mainly Fiction”. Yemen Times. Retrieved June 9, 2008. http://yementimes.com/article.shtml?i=1162&p=health&a=1

This news article is about a correlation between owning a pet cat and fetal hydrocephalus. It has been found that when women handle cat feces, they are at risk of having pregnancy problems in the future, mainly fetal Hydrocephalus. This information is according to researchers at the University of California-Davis School of Veterinary Medicine. It is caused by a parasite called Toxoplasma gondii. This parasite found in cat feces is the same found in raw, undercooked meat. This is an important and interesting article, and makes one think about their day-to-day activities and the effects they might have later in life. 

3.) Austin, Kathleen. “Health Workshops on Understanding Neurological Conditions and Strokes”. EVliving.com. Retrieved June 8, 2008. http://www.evliving.com/wellness.php?action=fullnews&id=10053

Health for a Lifetime is a series of workshops Phoenix Human Services Department Senior Services Division and St. Joseph’s Hospital and Medical Center. They regularly hold workshops for people with Hydrocephalus to help them better understand their illness. This article is relevant to all because workshops such as this one are available all over the country to help patients, family and friends cope with Hydrocephalus.

ONLINE REFERENCE SITES

1.) “Open Studies: Hydrocephalus”. (2008). U.S. National Institue of Health: Clinical Trials.gov. Retrieved June 9, 2008. http://clinicaltrials.gov/search/open/condition=%22Hydrocephalus%22

ClinicalTrials.gov is a registry of federally supported clinical trials in the United States and around the world. There are many different clinical trials listed that include Hydrocephalus. Some recent trials include comparing treatments for infants and comparing catheter related infection rates among different shunt systems. A registry of clinical trials can be helpful for anyone considering a certain treatment. They can look up the testing results and how the trial went. It is also helpful for anyone looking to become involved in a clinical trial. Being involved in a clinical trial gives a patient the opportunity to help researchers discover something new and eventually be able to make an impact on finding a cure.

 

2.) “Hydrocephalus”. (2008). Encyclopedia Britannica 09 June 2008. http://www.britannica.com/EBchecked/topic/278367/hydrocephalus

Encyclopedia Britannica provides an in depth look at Hydrocephalus. It gives a detailed definition, links to provide descriptions of complicated subjects concerning Hydrocephalus, and different references. They also give links to other informational websites. There is a downloadable “widget” you can install onto a computer to give constant updates. There are also audio and video options. Encyclopedia Britannica is easy to navigate through and easily understandable. 

GOVERNMENT ORGANIZATIONS

1.) “Hydrocephalus”. (2008). Medline Plus 09 June 2008. http://www.nlm.nih.gov/medlineplus/hydrocephalus.html

Medline Plus is a service of the U.S. National Library and the National Institutes of Health. Their section on Hydrocephalus gives a detailed description of the syndrome. It contains many reliable and trustworthy links to other sources and breaks those sources up into appropriate categories including latest news, symptoms, treatments, related issues, and articles. As a government sponsored website, it is a dependable resource.

2.) “NINDS Hydrocephalus Information Page”. (2008). National Institute of Neurological Disorders and Stroke. Retrieved June 9, 2008. http://www.ninds.nih.gov/disorders/hydrocephalus/hydrocephalus.htm

The National Institute of Neurological Disorders and Stroke (NINDS) helps fund and support research for neurological disorders and collects information about neurological disorders for public awareness. Their website gives a detailed description of Hydrocephalus, offers information about treatments, and updates readers on current research being done. It provides a list of helpful organizations and their contact information and also a list of recent publications. It also gives a list of publications in other languages.

FOR-PROFIT ORGANIZATIONS

1.) The Cleveland Clinic. (2007). Hydrocephalus: Patient’s guide to normal pressure hydrocephalus. Retrieved May 30, 2008 from http://cms.clevelandclinic.org/neuroscience/body.cfm?id=113.

The Cleveland Clinic is a world-renowned facility for health care and treatment located in Cleveland, Ohio. The Clinic is very well known for their acclaimed Neurological Institute. The Institute offers disease-specific, patient-focused care to adults and pediatric patients. Among their specializations include Hydrocephalus. The website offers a “Patient’s Guide to Normal Pressure Hydrocephalus: A step-up in the treatment of hydrocephalus.” The guide includes facts, symptoms, treatments, and offers the contacts of the physicians offered.

2.) Johns Hopkins Medicine. (2008). The Johns Hopkins Hydrocephalus and IIH Center. Retrieved June 9, 2008 from http://www.hopkinsneuro.org/hydrocephalus/

The Johns Hopkins Hospital has a specialized team of neurosurgeons who are experts at diagnosing Hydrocephalus. Their treatment program is the center of choice, having a very high success rate with few complications. The website is very interactive and informative, with an easy access to making an appointment.

STATISTICAL SOURCES

1.) “Statistics About Hydrocephalus”. (2008). Wrong Diagnosis. http://www.wrongdiagnosis.com/h/hydrocephalus/stats.htm#medical_stats

WrongDiagnosis.com is a website with an objective to encourage the public to be better informed and interested in managing their health. It is an independent, objective source of factual health information. It includes many different types of statistics for Hydrocephalus including hospitalization statistics, incidence statistics, and prevalence statistics. For example, did you know that approximately 49 people are diagnosed with Hydrocephalus per week?

 

2.) “Facts & Statistics: Hydrocephalus”. (2004). Nation Master. http://www.nationmaster.com/graph/mor_hyd-mortality-hydrocephalus

This website offers different categories of statistics. It also offers different ways to view the information provided, such as in a bar graph, pie chart, or map making it a helpful tool for all different people. It is divided up by country. In the United States, there were 720 deaths from Hydrocephalus in 2004

NON-PROFIT ORGANIZATIONS

1.) The Hydrocephalus Foundation, Inc. http://www.hydrocephalus.org/.

The Hydrocephalus Foundation, Inc., also known as HyFI, is a nonprofit and registered organization that provides education, support, and networking possibilities to patients, family and friends affected by hydrocephalus. Greg Tocco founded HyFI in 1993 in order to "give back" the support and resources that he received during his surgical procedures and recovery process. HyFI promotes research and facilitates training of healthcare specialists to improve treatment and patient outcome. The website is designed to introduce you to the organization and the people who run the foundation. The website also provides facts, updates the public with upcoming events and suggests links to help find additional information about hydrocephalus.

2.) National Hydrocephalus Association http://www.nhfonline.org/

The National Hydrocephalus Association (NHF) was founded in 1979 as a non-profit public service organization. They strive to assemble and disseminate information about Hydrocephalus, establish a communication network among families and patients, help others obtain a deeper understanding of the illness, promote research and increase public awareness. Their website is helpful in that it provides surveys, articles, stories, general information and ways to contact specialists.

BLOGS

1.) “Beyond Hydrocephalus”. (2007). Project Medishare Blog. http://projectmedishare.wordpress.com/2007/10/28/beyond-hydrocephalus/

Project Medishare Blog is dedicated to improving health in Haiti. This specific blog entry is about a treatment of Hydrocephalus in Port-au-Prince. It is interesting to see how Hydrocephalus is dealt with and affecting different countries. There are many more informative blogs written on Project Medishare that’s links are featured directly on this specific post.   

2.) “Violet’s Journey”. (2006-2008). Blogger. http://www.violetsjourney.blogspot.com/

Violet’s Journey is a blog written by a mother about her journey with her child who is suffering from Hydrocephalus. The blog contains a list of helpful vocabulary to refer to if some of the words used in the blog are confusing. Most helpful is the medical vocabulary. The blog contains personal stories as well as medical stories throughout her journey, making it a very personal website. It gives a play by play of every day life living with Hydrocephalus. This is good for a parent looking for advice or support on how to care with a child suffering from this syndrome.

MULTIMEDIA

1.) “Improved Surgical Technique Cures Hydrocephalus In Young Children”. (2005). Voice of America. http://www.voanews.com/english/archive/2005-02/2005-02-04-voa52.cfm?CFID=248687039&CFTOKEN=78614953

This is an audio clip of Dr. Benjamin Warf explaining Hydrocephalus, what it is, its symptoms and neurological effects. He goes on to explain a new and upcoming treatment referred to as an Endoscopic Third Ventriculostomy (ETV). He believes that the ETV procedure will change the course of Hydrocephalus and the outcome it has on people. This is a helpful resource for people looking for alternative treatments.

 

2.) “Hydrocephalus”. (2008). Children’s Hospital & Regional Medical Center, Seattle Washington. http://neurosurgery.seattlechildrens.org/conditions_treated/hydrocephalus.asp

This website includes a lot of multimedia as well as text in order to better understand Hydrocephalus. Important things to note would be the MRI scan of normal brain ventricles compared to the MRI scan of ventricles with Hydrocephalus, the video done by Anthony M. Avellino, MD, showing an example of an endoscopic third ventriculostomy procedure, and the different charts explaining treatments and procedures. Overall, this website is very informative and well-rounded including many different outlets to find information.

 

3.) “Brain Drain – Mexico”. (2001).  Journeymanpictures – youtube.com. http://www.youtube.com/watch?v=nRTLTSDmCcs

This video was done at the Institute of Neurology and Neurosurgery in Mexico City, Mexico. The video does an amazing job of explaining what Hydrocephalus is and the internal workings and effects it has on the body. It goes in depth on the treatments and how they are preformed on the patient. The video interviews patients and specialists for information. It gives an “inside look” to a hospital, showing x-rays and MRI scans and also shows the equipment put inserted into the skull as part of a shunt system. The video is very informative and would be helpful to people who are more visually oriented.

RECENT BOOKS

1.) Toporek, C. and Robinson, K. (1999). Hydrocephalus: A Guide for Patients, Families and Friends. Patient Centered Guides: Sebastopol.

Authors Chuck Toporek and Kellie Robinson have lived with hydrocephalus for years. Together, they have interviewed neurosurgeons, patient advocates, and families living with the condition to compile this book necessary for any patient, family member or friend of someone with Hydrocephalus. Hydrocephalus: A Guide for Patients, Families & Friends informs patient and family so that you can understand what treatments are available, select the best neurosurgeon, and participate more fully in patient care. It also informs you of what to expect during and after surgery, symptoms to looks for, where to receive support, and how to keep helpful records to reference for future diagnostic or surgical work. Families and friends who read this book will encounter medical facts clearly explained, advice to ease their daily life, and tools for patient advocacy.

 

2.) Cinalli, G., Maixner, W.J., Sainte-Rose, C. (2004). Pediatric Hydrocephalus. Springer: Berlin.

In the last ten years, pediatric neurosurgeons have witnessed a real revolution in the diagnosis and treatment of pediatric hydrocephalus, which is the most frequently encountered condition in everyday pediatric clinical practice. The evolution of the MRI and the advent of neuroendoscopic surgeries have brought about again the interest in the classification, cause and pathophysiology of hydrocephalus. The book offers an updated overview on the recent progress in this field, and a new approach to hydrocephalus. The book is a modern day interpretation and new presentation of an old disease. It discusses genetics, endoscopy, and cost-effective analyses of modern procedures and therapies. The volume will be useful not only for neurosurgeons, but for all specialists, patients, friends and family who are interested in the various aspects of hydrocephalus.

 

3.) Bellush, Terri Rice. (2004). All About Me (and my shunt). Trafford Publishing: Tennessee.

Author Terri Rice has first hand experience on Hydrocephalus. As a mother of Daryl, who is suffering from the syndrome, she has a motherly and honest outlook on her experience of raising a child has made this book a helpful and informative tool. This condition causes spinal fluid to accumulate in the head, making it grow, sometimes causing brain damage. A surgical procedure developed only a few years prior to Daryl's birth has kept him alive; he is now thirty-six and lives a fully independent life. The book is written in an easy to understand language that is perfect for young children who might not always comprehend what is going on. It also contains illustrations. The book is made to assure children that they are not alone in this situation. It is also a good book to use with siblings of the diagnosed child or for adults who need a quick understanding of the situation. 

EXPERTS

1.) Mark Luciano, M.D., Ph.D

Mark Luciano is the section head of Pediatric Neurosurgery at the Center for Pediatric Neurology at The Cleveland Clinic. He was appointed to this position in 1993. Dr. Luciano also holds staff positions in Pediatric Surgery, Biomedical Engineering, and Neurosciences at The Cleveland Clinic. He attended the University of Chicago Pritzker School of Medicine in Chicago, Illinois. He experienced training at the Children’s Hospital of Boston in Boston, MA and at the National Institutes of Heath in Bethesda, MD. He completed his residency at the Hospital of University of Pennsylvania in Philadelphia, PA and completed his internship at the Loyola University Medical Center, Foster G. McGaw Hospital in Maywood, IL.  Mark Luciano is a very qualified and knowledgeable source, as well as one of the most skilled in his field. Contact Dr. Luciano by phone at 216.444.5747.

2. Dr. Daniele Rigamonti

Dr. Daniele Rigamonti received his medical degree from University Cattolica in Rome, Italy. He completed an internship in neurological surgery at Spedali Civili in Italy. He completed an internship in surgery and his residency in neurological surgery at Mt. Sinai School of Medicine in New York City. He also received training in neurovascular surgery at Barrow Neurological Institute in Arizona. He is currently a Professor of Neurosurgery and Director of Radiosurgery at Johns Hopkins focusing on vascular diseases that affect the brain and spinal cord. His additional clinical interests include benign and metastatic brain tumors and adult hydrocephalus.
Dr. Rigamonti currently sees patients at the Johns Hopkins Outpatient Center in Baltimore on Thursdays and Fridays. You can contact him through The Johns Hopkins Hospital Department of Neuorsurgery, Phipps Building Room 104, 600 Wolfe Street, Baltimore, MD 21287 or by phone at 410.955.2259.

"A true benefit to Johns Hopkins is just how comprehensive our treatment options are. A critical feature to our program here is helping patients weigh their options and feel comfortable with their course of action." - Dr. Daniele Rigamonti

3. Thomas G. Smith

Thomas G. Smith is the Outreach and Media Liaison for the Hydrocephalus Association. He can help you find a family located near your city that is willing to talk with you about how Hydrocephalus has impacted their lives, help you with finding information, or just be there to listen. Thomas can help you find a top ranked physician to consult about treatments and diagnosis. He can also refer you to a member of the Hydrocephalus Association for more information. Contact him by email at Tom@hydroassoc.org or by phone at 415.732.7043. Contact him by mail at: 

Thomas G. Smith

Outreach & Media Liaison

Hydrocephalus Association

870 Market Street, Suite 705

San Francisco, CA 94012

4. Debbi Fields

Debbi Fields is the Executive Director of the National Hydrocephalus Foundation. Debbi was diagnosed with hydrocephalus as an adult. She became symptomatic when her body was unable to compensate for the syndrome any longer. Shortly after Debbi began treatment, she set out to find information on hydrocephalus and to interact with others whose lives were affected by hydrocephalus - both children and adults. Finding very little information in the local libraries, she contacted state and government agencies to obtain information. Debbi found the contact information for the National Hydrocephalus Foundation (NHF) in a magazine. The executive director of NHF, Warren Barshes, personally contacted her himself, sent her educational material and answered all of her questions. She then became NHF's adult peer contact, so that she could assist other adults with hydrocephalus and their families. Debbi started a local support group in 1992 for families and individuals dealing with Hydrocephalus. Debbi became the executive director of National Hydrocephalus Foundation in 1997. Having a lot of experience in the field, she is an amazing contact for educational information, as well as emotional support. Contact her by phone at 562.924.6666; 888.857.3434, by email at nhf@earthlink.net or by mail at:

Debbi Fields


Executive Director


12413 Centralia Rd.


Lakewood, CA 90715-1653

5.) Paul Tent

Paul Tent was diagnosed with Hydrocephalus at age 17 and is now 50. He has undergone many procedures throughout his journey with the syndrome and has had over 20 surgeries in the process. He is an active member of the Hydrocephalus Support Group of Northeast Ohio. He is a down to earth and personal source, great for advice as well as a personal and relatable story. For privacy reasons, please contact me for Paul's contact information.