Syringomyelia (SM):

Thank you for your support in raising the awareness of Syringomyelia, and supporting those living with SM &CM. 

Syringomyelia (sear-IN-go-my-EEL-ya); also known as SM, is a Syrinx (also known as a tubular filled cyst) that forms inside of the spinal cord. Unfortunately there are many who are living with this rare, progressive, incurable, disabling neurological condition without knowing it due to the lack of knowledge and lack of testing. By raising public awareness and insisting that professionals/doctors get educated - we are trying to help others. There is much work to be done in order to increase awareness in the medical community as well as with the public, to get the help and reduce the suffering of those with SM, their family and friends.

What is Syringomyelia?
Syringomyelia: is a disorder in which a cyst forms within the spinal cord. This cyst, called a syrinx, can expand and elongate over time, destroying the center of the spinal cord. Syringomyelia can be caused by birth defects or malformations, certain illness’s or through trauma to the spine such as a car accident or even a sports injury. To date, there is no known cure for Syringomyelia, and the only treatment patients receive are for the symptoms that it causes. Syringomyelia is also known to cause other conditions and medical problems for those with it.

Syringomyelia is considered rare.
Each patient experiences a different combination of symptoms. These symptoms vary depending on the extent and, often more critically, to the location of the Syrinx within the spinal cord. Symptoms usually begin in young adulthood. Signs of the disorder tend to develop slowly, although sudden onset may occur with coughing, straining or due to trauma. Syringomyelia causes a wide variety of neuropathic symptoms due to the damage of the spinal cord. Visit our "personal story" page and see personal accounts of some people living with SM. 

Syringomyelia patients may experience:

  • Severe chronic pain.
  • Stiffness in the back, shoulders, and extremities.
  • Loss of ability to feel extremes of hot or cold, especially in the hands.
  • Cape-like loss of pain and temperature sensation along the back and arms.
  • Some patients may experience paralysis or paresis temporarily or permanently. 
  • Abnormal body temperature or sweating.
  • Bowel control issues. 
  • other problems. 

Two forms of Syringomyelia Acquired or Congenital:

Generally, there are two forms of Syringomyelia: acquired and congenital. One form of the disorder involves a part of the brain called the brainstem. When Syrinxes affect the brainstem, the condition is called Syringobulbia.

Acquired (non-communicating Syringomyelia), this form of Syringomyelia occurs as a complication of trauma, meningitis, hemorrhage, a tumor, or arachnoiditis. The Syrinx or cyst develops in a segment of the spinal cord damaged by one of these conditions. The Syrinx then starts to expand. Symptoms may appear months or even years after the initial injury, starting with pain, weakness, and sensory impairment originating at the site of trauma.

Primary symptom of post-traumatic Syringomyelia (often referred to using the abbreviation of PTS) is pain. Symptoms such as pain, numbness, weakness, and disruption in temperature sensation may be limited to one side of the body. Syringomyelia can also adversely affect sweating, sexual function, and, later, bladder and bowel control. A typical cause of PTS would be a CAR ACCIDENT, sports injury, slip and fall or similar trauma involving a WHIP-LASH-INJURY.

Congenital (communicating Syringomyelia), relates to an abnormality of the brain called Arnold Chiari Malformation. This is the most common cause of Syringomyelia, where the anatomic abnormality causes the lower part of the cerebellum to protrude from its normal location in the back of the head into the cervical or neck portion of the spinal canal. A Syrinx may then develop in the cervical region of the spinal cord. Because of the relationship that was once thought to exist between the brain and spinal cord in this type of Syringomyelia. Symptoms usually begin between the ages of 25 or 40 and may worsen with straining or any activity that causes cerebrospinal fluid pressure to fluctuate suddenly. Some patients may have long periods of stability. Some patients with this form of the disorder also have hydrocephalus, in which the cerebrospinal fluid accumulates in the skull, or a condition called arachnoiditis which a covering of the spinal cord- the arachnoid membrane is inflamed.

So you have Syringomyelia, what to do next?

  • Find a neurosurgeon who is experienced in the treatment of Syringomyelia.

Surgery is the only viable treatment for SM, but not all patients will advance to the stage where surgery is needed, Syringomyelia can remain stationary for long periods of time and in some cases progress rapidly. In some patients it may also be necessary to drain the syrinx. The decision to use a shunt requires extensive discussion between doctor and patient, as this procedure carries with it greater risk of injury to the spinal cord, infection, blockage, or hemorrhage and may not necessarily work for all patients.

  • Ensure you have a pain management doctor.

Surgery is not always recommended for Syringomyelia patients. For many patients, the main treatment is pain killers. Physicians specializing in pain management can develop a medication and treatment plan to alleviate pain. 

Both SM and CM are considered rare and are frequently under diagnosed because doctors are not fully educated to look for them and fail to do the tests that can easily diagnose them. SM has no cure but symptoms can be treated and progression can be slowed until we find a cure. CM can be treated with surgery, but the amount of permanent damage can be lessened by early detection.