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Chiari and Spina Bifida
Information Page 1

Find information about medical
Links,
Forums,
chat rooms,
discussion lists,
support groups,
and personal home pages
about the following conditions.

Arnold Chiari Malformation
Spina Bifida
Hydrocephalus
Syringomyelia
Myelodysplasia
Dandy-Walker Syndrome
And Other Rare Medical Disorders
with links to Personal Home Pages
Right click on a link to open
into a new window, and stay connected HERE.
Please email me about links that do not work.

This is presented to offer links
for additional information only.
Disclaimer: The information and reference materials
contained herein is intended solely
for the information of the reader.
No warranty is made as to nature
or accuracy of those sources
nor the information provided.
It should not be used for treatment purposes,
but rather for discussion
with the patient's own physician.

Subscribe to The World ACM Association Support Group

chiari archive Hosted by eGroups.com

Be sure to read the latest research article
in the Neurosurgery Journal, May 1999.
Dr. Thomas H. Milhorat, and others
published research results.

Arnold Chiari Malformation

The most frequent complaint
is headache and neck pain.
The headache is usually in the
back of the head and neck area
and is aggravated by cough,
sneezing, or exertion.
The headache may also worsen by
turning or extension of the neck.

Brain stem, spinal cord, cranial nerve,
and cerebellum problems include:
disordered eye movements ("jumping eyes")
facial pain or pins and needles feelings
hearing loss
ringing in the ears (tinnitus)
dizziness
swallowing difficulties
sleep apnea
respiratory arrest
cough syncope (light headedness or fainting)
nystagmus (jerking eye movements)
dysarthria (difficulty in speaking)
ataxia (balance and coordination problems)
sensory dysesthesias/numbness
chronic sensory loss
weakeness in the upper extremities
bowel and bladder difficulties.
People with ACM I and cough syncope syndrome
sometimes have irregular heart rates.
Some have problems with their heart rate
when going from lying down
moving up to a sitting position.

The MRI is the best test for people
suspected of having a Chiari Malformation.
Many research studies are being conducted
into this disorder. Links to various sites
for further information are available
by sending a request to my E-Mail box.
A super site for information is located at
WACMA

Chiari Links in alphabetical order

American Association of Neurological Surgeons

This Site includes; Anatomy of the brain

Anatomy of the Spine

Patient Resources

There is a huge page of medical, educational,
and governmental links

American Syringomyelia Alliance Project (ASAP)
Introduction to Arnold-Chiari malformation
and a brief biography of its namesake.
Started in 1988
Information for affected individuals & families,
the public or media professionals
(e.g., clinicians, teachers)
Peer support matching ndividuals/families
Research: linking researchers and families
Educational fact sheets
pamphlets, videos, movies, and medical articles.

Association for Spina Bifida and Hydrocephalus
42 Park Road, Peterborough, PE1 2UQ England.
This web site has extensive information
about Spina Bifida and hydeocephalus
laid out in an outline format.

Beth Israel Hospital
Designed as a service for families of children
who suffer from ACM.
Site contains pages on clinical presentation,
diagnostic evaluation, treatment
and long-term prognosis.

Bowman Gray/Wake Forest
School of Medicine
Links for Spina Bifida
Chiari Links
Links for hydrocephalis
Links for Spina Bifida and Myelodysplasia

Canadian Syringomyelia Network (CNS)
CSN is a non-profit charitable organization
established in Scarborough, Ontario,
in May of 1993. This is a support network
for people who suffer with Syringomyelia
and individuals interested in this disorder.

Chiari Information Exchange
Articles and information on Arnold-Chiari
brain malformation and syringomyelia.

Columbia University
Web site of the Columbia niversity
College of Physicians and Surgeons
discusses the causes, symptoms and diagnostics
of Chiari malformation. They offer a pictorial
description of the surgery used to treat it.

Columbia-Presbyterian Medical Center
This site is edited by Neil Feldstein MD,
a pediatric neurosurgeon at Columbia-Presbyterian.
It uses easy to understand words to help
parents understand Chiari.
There are pictures of the basic Chiari Malformation
operation. The subject of hydrocephalus
is explained along with a link
to a support group forum
that you may use as a "guest".
It is under Support Group-Hydrocephalus.
Syringohydromyelia
is also known as syringomyelia and hydromyelia,
is explained in depth here by Neil Feldstein MD,
a pediatric neurosurgeon at
Columbia-Presbyterian Medical Center
in New York City.

Family Village
is a very complete site with links to many
related topics. It has chats, bulletin boards,
links to many topics. Here is a complete resource
for Spina Bifida & Related Disorders.
There are about 20 Personal Web Page Links.

Florida Medical Network
Links to key Internet resources
on this neurological illness.
Topics include general information,
journals and publications,
organizations and associations,
and institutes and universities.

Hydrocephalus Center
is part of the PatientCenters.com site.
Here you will find resources, suggested readings,
medical info, including journals & libraries.

The Hydrocephalus Foundation, Inc. (HyFI)
in Massachusetts is a non-profit organization.
This web site is very complete.
Links are offered to sites all
around the world for info and support.

The March of Dimes
(1-888-MODIMES (663-4637)
has a wonderful resource center
full of information about specific
birth defects. There is an entire
page of links, including a link to the
CENTERS FOR DISEASE CONTROL AND PREVENTION
at their Division of Birth Defects
and Developmental Disabilities.

Martindale's Health Science Guide has a special
brain and neuro area.
Here are medical dictionaries,
literature and searches.
This HUGE site has a little
bit about everything imaginable.

Massachusetts General Hospital
If you have questions or concerns
about Arnold Chiari malformation, try this free,
nonprofit newsgroup for patients,
sponsored by the Neurology Department of
Massachusetts General Hospital.
Neurology Chat Rooms provided as a
free public service by the Department of
Neurology at Massachusetts General Hospital.

Medical Dictionary
located on a cancer resource site,
includes many words we want to look up.
(an example, myelomeningocele;
A congenital defect in which the
neural arches fail to close,
so exposing the contents of the
spinal canal posteriorly.
Usually occurring in the lumbosacral region
(lower back) of the spine.

Mediconsult.com web site
A brief discussion of what the illness is,
as well as its symptoms, typical treatment
and research developments.
The site also provides a bibliography of
suggested readings and a list of organizations.

The About.com, formerly the
Mining Co.
has a huge search area covering many
medical areas, including all of our interests.

NHIC
is the National Health Information Center. Here
you will find the toll-free phone numbers
for hundreds of groups. Sometimes, we need
to talk to "real" people.

National Institutes of Health
Located in Bethesda, Maryland 20892
This article was written June 1996
covering a related DANDY-WALKER SYNDROME.

National Institute of Neurological Disorders
and Stroke (NINDS)Chiari fact sheet including causes,
diagnosis and treatment.
Factsheet on research and treatment of this rare
congenital brain anomaly.
Links to further information available here.
Syringomyelia fact sheet
including causes, diagnosis and treatment.
Links to further information available here.
Workshop Summary
Syringomyelia Conference hosted June 20-21, 1994

National Parent Network on Disabilities (NPND)
has links on all ranges of topics. This is
very complete ranging from home to the
White House and federal government info. The
LINKS page is super.

Neurosciences on the Internet has a built-in
search engine on site. This site is edited and
maintained by Neil A. Busis, M.D.
You can find newgroups, mailing lists,
forums, organizations, as well as
database information from searches.

Oregon Health Sciences University
CliniWeb area offers a page on
neural tube defects that features links
to sites on Arnold-Chiari Malformation,
including review, therapy, and diagnosis articles.

Queensland Association
(located in Brisbane, Australia)
for People with Spina Bifida
or Hydrocephalus has a page of chiari
information with drawings of the head.

Radiodiagnostics
Prof. Dr. Bernhard Kramann
Homburg (Germany)
Homepage of the Dept. of Radiodiagnostics
Collection of specific MRI scans of
Arnold-Chiari I malformation with Syringomyelia
in patient presentations.
The Virtual Radiological Case Collection #178
The Virtual Radiological Case Collection # 179

Spina Bifida Association of America
This (SBAA) Web Site is well worth
a look for references.

Spinal Cord Injury Resource Center
Drawings
and explanations of the spinal cord
and nerve roots are great. This site
is geared to spinal cord injuries, but
it has great reference material.
There is also a newsletter
and a ListBot newsletter. Check This site.
Super areas that shows and explains the
anatomy and physiology of the spinal cord.

Syringo Organization
Study of Inherited and Neurological
Disorders (CSIND). Duke University
Medical Center is conducting a pilot study
in collaboration with American Syringomyelia
Alliance Project (ASAP) and Dr. Thomas Milhorat,
Chairman of the Department of Neurology
at University Hospital in Brooklyn.

University of Missouri, (Columbia)
Hyperbook of Neurosurgery
The University of Missouri offers this
online guide book, featuring pages on
definitions and background,
clinical presentation, pathophysiology,
diagnostics, treatment, outcome and
links to articles and related sites.
Articles by John Oro', MD.

University of North Carolina
at Chapel Hill, Division of Neurosurgery
has many good pages;
Neurosurgery Residents' Online Handbook
UNC's Online Resident's Handbook,
Common Spinal Reflexes

Excellent explanation of muscles
showing nerve roots,
peripheral nerves and ations.

The University of Washington

Explanations of the Ventricular System
and Cerebral Spinal Fluid (CSF).

Versalius
site, has images of entire body and head.
You must register, but it is free.

Wake Forest's Department of Neurosurgery

provides an index of Web sites
on Arnold-Chiari malformation,
Dandy-Walker malformation and syringomyelia.

World Arnold-Chiari Malformation Association
(WACMA)
previously located at
http://www.geocities.com/HotSprings/2830/
Read about one patient's experience
from the discovery of his ACM through
surgery and recovery, including photos.
Find research articles and books
along with other facts and links
on this rare congenital condition.

SUPPORT GROUPS

World Arnold Chiari Malformation Association
WACMA Online.
nearly 500 members. Founded 1995.
Provides information and support to persons
concerned with Arnold Chiari Malformation
AKA cerebellomedullary malformation syndrome
via e-mail and the web.
If you only visit one site,
be sure to stop here FIRST !
Come see the "zipperheads".

Peggy Guin, R.N. explains chiari
is a must read web page.

Forums & Mailing Lists
& Discussion Groups

On-line discussion groups at Family Village.
Arnold-Chiari Malformation Discussion List
To subscribe send a message to:
chiari-subscribe@makelist.com
In the body of the message type: Subscribe
List Owner at chiari-owner@makelist.com

The World ACM AssociationMGH Neurology
Provides open forums where people can
discuss medical issues freely,
real time discussions in the Neurology Chat Room,
a photograph collection,
and "A Window on my Mind,"
where you can read or write creatively.
This is a webforum to discuss and comment
on Arnold Chiari Malformation.
This is a web forum to discuss and comment
on Syringomyelia.
This is a webforum to discuss and comment
on Tethered Cord Syndrome.
This is a webforum to discuss and comment
on Spina Bifida.