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Madisons Foundation - Moms And Dads In Search Of Needed Support
What
Syringomyelia is a neurological disorder in which fluid-filled cavities called syrinxes develop within the spinal cord. This may be a congenital (present at birth) defect or acquired through injury, infection, or tumors.Who
In the United States, the prevalence of Syringomyelia is approximately 8.4 out of 100,000 live births. It usually affects more males than females. No racial or geographic predilection is known at this time.Signs and Symptoms
Symptoms vary according to the level of the spinal cord at which the syrinx forms and are primarily are a result of direct compression. The following is a list of general symptoms:
- Sensations of numbness, tingling, or burning of the skin
- Loss of sensation with regards to body position, vibration, temperature, or pain
- Muscle weakness leading to difficulty breathing.
- Loss of muscle mass or muscle atrophy.
- Impaired bowel and bladder functions
- Decreased reflexes in the elbows and wrist. The syrinx may expand over time, and this may cause further sensory loss and loss of muscle control.
Possible Causes
There are many causes of Syringomyelia. The majority are related to structural abnormalities either in the skull bones, brain tissue (called cerebellar herniation or chiari malformation), or membranes that surround the brain (arachnoid cysts). Other causes include tumors, infection, and injury.Diagnosis
The diagnosis of Syringomyelia is made through physical examination and history of symptoms. Imaging studies will confirm the diagnosis and may include: computed tomography (CT), magnetic resonance imaging (MRI), or X-rays. CT scans are useful for bony evaluation while MRI provides more detail on structures in the back of the brain. Myelography, or the study of the spinal cord can also be useful. Your doctor may also elect to perform a spinal tap (also known as a lumbar puncture) to obtain some cerebrospinal fluid (CSF) for assessment. During the procedure, most of the time, the pressure of the CSF is elevated. The laboratory results can show an elevated level of protein in the CSF.Treatment
There is no specific treatment for Syringomyelia other than seeking the appropriate type of surgical intervention. There are several different types of surgery, but all aim to relieve compression of the spinal cord. Early consultation with a pediatric neurosurgeon is recommended. Your neurosurgeon may elect to insert a shunting device that will relieve the pressure on the spinal cord and brain. Physical therapy and occupational therapy may be helpful in maintaining muscle strength or regaining neurological activity. Patients should also avoid high impact activities (e.g. jumping) to prevent further injury. Consultation with a pediatric neurologist is also recommended.Prognosis
There is great variability in the prognosis of Syringomyelia, depending upon the cause and degree of neurological deficit. There seems to be a better outcome if treatment is begun earlier in the course of the disease, which may remain stable for several years. However, the syrinx may expand, leading to further neurological deficits and chronic pain.Connect with other parents
In the spirit of community and support, Madisons Foundation offers the unique service of connecting parents of children with rare diseases. If you would like to be connected to other parents of children with this disease, please fill out this brief form.Weblinks
American Syringomyelia Alliance Project, Inc
This website has a lot of information on Syringomyelia and related disorders. It also has a message board and a listserv for members to ask questions or get support.
National Institute of Neurological Disorders and Stroke
This webpage has general information about Syringomyelia and links to several organizations’ websites that are aimed towards helping people with neurological disorders.
National Chronic Pain Outreach Association
This organization provides support groups, quarterly newsletters, and a great amount of information for those with chronic pain.
Syringomyelia Facts
General information about syringomyelia and some useful weblinks.
Medline Plus: Syringomyelia
NIH based website with many links to general information about the disease and ongoing research in the field.
Canadian Syringomyelia Network
Truly international website with many useful links and support based information.