Tethered Spinal Cord Syndrome Association, Inc. "The Backbone of Hope"

Condition Information

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What is Tethered Spinal Cord Syndrome?
Tethered Spinal Cord Syndrome is a neurological disorder casued by tissue attachments that limit the movement of the spinal cord within the spinal column.  These attachments cause an abnormal stretching of the spinal cord and can cause neurological damage as the tightness increases due to continued growth of the spinal column.  

What are the symptoms?
-Decrease in strength of legs or feet
-Pain in the lower back region
-Loss of reflexes and sensation in the legs
-Scoliosis (curvature of the spine)
-Skin abnormalities directly overlying the spinal cord, such as a hairy patch, dimple or birthmark
-Spasticity
-Changes in gait
-Elimination pattern changes (bladder or bowel)
-Frequent urinary tract infections
-Imperforate anus

Common Causes of a Tethered Spinal Cord

Lipoma or Lipomyelomeningocele
Tethering is due to fatty tissue connecting to the lower end of the spinal cord.  This fatty tissue attaches to surrounding tissues of the back.

Split Cord Malformation
(Diastematomyelia)
A congenital condition where the spinal cord is split into two halves.  The split can occur at any level and the split cords may reconnect or not at some point below the split.  The bone, cartilage or fibrous tissue between the two halfes of the spinal cord causes the tethering.

Dermal Sinus Tract
A small dimple-like opening in the middle of the spine that may connect deep into the spinal cord.  These are usually located in the lower back.  the tethering is caused by the dermal sinus being attached to the end of the spinal cord.

Fatty Filum Terminale
A small, threadlike piece of tissue that connects the lower end of the spinal cord to the end of the spinal canal.  This is called the filum terminale.  If the filum is shorter than normal, it pulls the spinal cord down and causes tethering

Diagnosis

-Magnetic resonance imaging (MRI)
A diagnositc test that produces three-dimensional images of body structures; it can show the spinal cord, nerve roots and surrounding areas.
-Manual muscle test (MMT)
Performed by a physical therapist to assess strength, or lack thereof, of lower extremeties.
-Urodynamics studies
CMG testing, which evaluates bladder capacity, emptying and pressure.  Voiding cysto-urethrogram which evaluates reflux.

Usual Treatment for Tethered Spinal Cord
Upon presentation of symptoms, non surgical treatment is not usually effective.  Early symptoms will progress and worsen as time passes without surgical untethering.  Two things are hoped to be accomplished by untethering.  One, to stop further neurological deterioration.  Two, to hopefully see some improvement in any lost function, however, some neurological function may never be recovered.



The ultimate goal of the TSCSA is to minimize symptoms of individuals affected by TSCS and dedicate research to finding causes, cures, and efficient treatment of chronic tethers.

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Tethered Spinal Cord Syndrome Association, Inc.
24 S. Evergreen Avenue
PO Box 149
Arlington Heights, IL  60005
tscsadirector@yahoo.com
847.347.0893

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