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Possible Symptoms of Syringomyelia

Back pain; headaches; stiffness, weakness or pain in the back, shoulders, arms or legs; loss of the ability to feel extremes of hot or cold, especially in the hands?

You may have Syringomyelia (SM)

What is syringomyelia? (sear-IN-go-my-ELL-ya)

Syringomyelia (SM) is a disorder in which a cyst forms within the spinal cord. This cyst, called a syrinx, expands and elongates over time, destroying the center of the cord. Since the spinal cord connects the brain to the nerves in the extremities, this damage may result in pain, weakness, and stiffness in the back, shoulders, arms or legs. Other symptoms may include headaches and loss of the ability to feel extremes of hot or cold, especially in the hands and disruption in body temperature. SM may also adversely affect sweating, sexual function and bladder and bowel control.

What causes Syringomyelia?

Trauma to the spinal cord or congenital developmental problems of the brain and/or spinal cord may result in SM.
Spinal cord trauma such as a car accident or serious fall may manifest years later as SM.
Congenital developmental problems, sometimes undetectable may result in syringomyelia.

In either case, the condition may lie dormant and undetected for months or years until a symptom or variety of symptoms become bothersome enough to warrant medical attention. Many people with SM are not diagnosed until mid-life.

A number of medical conditions can cause an obstruction in the normal flow of cerebrospinal fluid (CSF), redirecting it to the spinal cord itself. This results in the formation of a syrinx (cyst that fills with CSF). Pressure differences along the spine cause the fluid to move within the cyst. It is believed that this continual movement of fluid results in cyst growth and further damage to the spinal cord and connecting nerves.

How is Syringomyelia diagnosed?

MRI (Magnetic Resonance Imaging) is the leading diagnostic tool used in determining SM. The MR imager takes pictures of body structures, such as the brain and spinal cord, in vivid detail. MRI Testing will show the syrinx in the spine or any other conditions, such as the presence of a tumor. MRI is safe, painless, and informative and has greatly improved the diagnosis of syringomyelia.

What are the different forms of SM?

Generally, there are two forms of SM. The disorder may be related to a congenital abnormality of the brain called Arnold Chiari malformation. A syrinx may then develop in the cervical region of the spinal cord; this is referred to as communicating syringomyelia. Some people with this form of the disorder also have hydrocephalus (water on the brain), a condition in which CSF accumulates in the skull, or arachnoiditis, in which a covering of the spinal cord is inflamed.

The second major form of SM occurs as a complication of trauma, meningitis, hemmorrhage or tumor. Here, the cyst or syrinx develops in a segment of the spinal cord damaged by one or more of these conditions. The syrinx may start to expand; this is sometimes referred to as noncommunicating syringomyelia.

NIH/NINDS Grants Available for SM Research!

NIH Neurological Institute
Grants Management
7550 Wisconsin Avenue
Federal Building, Room 1004
Bethesda, MD 20892 USA
(301) 496-5751

Obtain more Information on SM:

For additional information contact the organizations below:

National Institute of Neurological Disorders and Stroke
(request Publication #94-3780 on Syringomyelia)
National Institutes of Health
Bethesda, MD 20892 USA

Office of Scientific and Health Reports
NIH Neurological Institute
P.O. Box 5801
Bethesda, MD 20824 USA
(301) 496-5751
(800) 352-9424

American Syringomyelia Alliance Project, Inc.
P.O. Box 1586
Longview, TX 75606-1586 USA
(903) 236-7079
(800) ASAP-282
ASAP-L List Server: To subscribe, click the link (if your browser supports sending E-mail) and send a message with a blank Subject: line containing the following text in the message itself:

SUBSCRIBE ASAP-L your-first-name your-last-name If your browser is not configured to send mail, send the above message using another mailer to "ASAP-L@maine.maine.edu"

National Organization for Rare Disorders
P.O. Box 8923
New Fairfield CT 06812-8923
(800) 999-6673, (203) 746-6518, (Fax) (213) 746-6481.

Chiari & Syringomyelia Foundation (CSF, Inc.)
Dorothy J. Poppe, Executive Director
29 Crest Loop
Staten Island,NY 10312
Phone: (718) 966-2593

Paralyzed Veterans of America
National Office
801 18th Street, NW
Washington, DC 20006 USA
(202) 872-1300

UCLA Medical School Neurosurgery Web Site

Massachusetts General Hospital

Developmental Neurosurgery Homepage

You may also want to visit ChronicIllNet, the first multimedia Internet information source dedicated to chronic illnesses including neurological diseases, cancer, Persian Gulf War Syndrome, autoimmune diseases, Chronic Fatigue Syndrome, AIDS, and heart disease.

Information about a Genetic Research Study for Chiari Type I Malformation (CMI) with or without Syringomyelia

Are some forms of syringomyelia and Chiari malformations inherited?

This is a question often asked by individuals and family members of someone with CMI and/or syringomyelia. In order to answer this question, researchers at the Center for Human Genetics at Duke University Medical Center are conducting a genetic research study.

Duke is requesting the participation of families who have TWO OR MORE members with CMI with or without syringomyelia. These family members must be related to each other by blood, and BOTH be willing to participate. At the current time, Duke IS NOT accepting families in which the only diagnosed members are a parent and a child. Participation in the study involves that at least two diagnosed family members:

contact the Duke study coordinator
answer questions about family and medical history
complete a medical questionnaire
provide a facial photo
allow Center for Human Genetics researchers to review medical records and MRIs to confirm the diagnosis of CM1/S
provide a blood sample to the researchers
potentially ask other first-degree family members (parents, siblings, children) to participate

Please note that Duke's research is concentrated on studying genetic causes of CMI with or without syringomyelia. With research as their primary focus, they are not in a position to communicate medical advice.

If your family meets the above-mentioned criteria and you are interested in learning more about this study, please e-mail Duke at chiari@chg.duhs.duke.edu. Patients will not have to travel to Duke University Medical Center (DUMC) and there is no charge to participate in this study.

Thank you.

Allison Ashley-Koch, Ph.D., Principal Investigator

Duke University Medical Center
Center for Human Genetics
DUMC 3445
Durham, NC 27710

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Syringomyelia illustration and Spanish translation developed for this page by Jay Williams Design.