This patient support community is for discussions relating to Peripheral Nerve Hyperexcitability (PNH) and the various conditions related to it such as neuromyotonia (NMT), cramp fasciculation syndrome (CFS), benign fasciculation syndrome (BFS), Isaacs syndrome and others.
What is Tethered Spinal Cord Syndrome?
Tethered spinal cord syndrome is a neurological disorder caused 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. The course of the disorder is progressive. In children, symptoms may include lesions, hairy patches, dimples, or fatty tumors on the lower back; foot and spinal deformities; weakness in the legs; low back pain; scoliosis; and incontinence. Tethered spinal cord syndrome may go undiagnosed until adulthood, when sensory and motor problems and loss of bowel and bladder control emerge. This delayed presentation of symptoms is related to the degree of strain placed on the spinal cord over time. Tethered spinal cord syndrome appears to be the result of improper growth of the neural tube during fetal development, and is closely linked to spina bifida. Tethering may also develop after spinal cord injury and scar tissue can block the flow of fluids around the spinal cord. Fluid pressure may cause cysts to form in the spinal cord, a condition called syringomyelia. This can lead to additional loss of movement, feeling or the onset of pain or autonomic symptoms.
Is there any treatment?
In children, early surgery is recommended to prevent further neurological deterioration. If surgery is not advisable, spinal cord nerve roots may be cut to relieve pain. In adults, surgery to free (detether) the spinal cord can reduce the size and further development of cysts in the cord and may restore some function or alleviate other symptoms. Other treatment is symptomatic and supportive.
Surgery for tethered cord is considered very controversial.Most times the TC does not show up on an MRI and is considered hidden or occulta. Because it is hidden it is difficult to dx.
What is the prognosis?
With treatment, individuals with tethered spinal cord syndrome have a normal life expectancy. However, some neurological and motor impairments may not be fully correctable. What research is being done? The NINDS conducts and supports research on disorders of the spinal cord. The goals of this research are to find ways to prevent, treat, and cure these disorders. NIH Patient Recruitment for Tethered Spinal Cord Syndrome Clinical Trials At NIH Clinical Center Throughout the U.S. and Worldwide Organizations
Chiari Malformation and Syringomyelia are related conditions to tethered cord. Cervical cranial instability is also something that one dx'd with tethered cord may have to deal with.
National Organization for Rare Disorders (NORD) P.O. Box 1968 (55 Kenosia Avenue) Danbury, CT 06813-1968 http://www.rarediseases.org
Tel: 203-744-0100 Voice Mail 800-999-NORD (6673) Fax: 203-798-2291
Spina Bifida Association of America 4590 MacArthur Blvd. NW Suite 250 Washington, DC 20007-4266 http://www.spinabifidaassociation.org
Tel: 202-944-3285 800-621-3141 Fax: 202-944-3295
Prepared by: Office of Communications and Public Liaison National Institute of Neurological Disorders and Stroke National Institutes of Health Bethesda, MD 20892 NINDS health-related material is provided for information purposes only and does not necessarily represent endorsement by or an official position of the National Institute of Neurological Disorders and Stroke or any other Federal agency. Advice on the treatment or care of an individual patient should be obtained through consultation with a physician who has examined that patient or is familiar with that patient's medical history. All NINDS-prepared information is in the public domain and may be freely copied. Credit to the NINDS or the NIH is appreciated. Last updated May 07, 2008