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.
Syringomyelia is a disorder which a cyst or cavity forms within the spinal cord; the cyst is called a Syrinx, the Syrinx can expand and elongate over time, destroying the spinal cord and damaging the nerves that run through the spinal cord. 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.
Spinal Nerve Function
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.
CAR ACCIDENT VICTIMS: It's unfortunate that you have been involved in an accident; but yes car accidents are affecting people around the world causing Syringomyelia or making someone symptomatic. Please ensure you have a primary doctor who will advocate for you, and please ensure that you have a lawyer who genuinely cares about you, while in the process it's important that you get a second opinion from an independent lawyer to ensure that you are making the right decision and that you understand what you are signing or what you are told you are signing. Being on strong medication can affect the way you understand things so don't make the mistake of relying on someone you should trust. Don't allow a lawyer to rob you of your innocence and trust. Syringomyelia is a Catastrophic injury so please ensure you get the care you need for the rest of your life; otherwise you will be left to suffer. Please check the laws of your country. In Canada, even if you were born with a condition and the accident makes it symptomatic the insurance company is liable.
What can make PTS difficult to diagnose is the fact that symptoms can often first appear long after the actual cause of the Syrinx occurred, e.g. a car accident occurring and then the patient first experiencing PTS symptoms such as pain, loss of sensation, reduced ability on the skin to feel varying degrees of hot and cold, a number of months after car accident.
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?
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.
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.
Activities to avoid with Chiari Malformation and SyringomyeliaThe subject no one wants to hear about, but Chiari Malformation and Syringomyelia are life-altering conditions and you WILL have to face that and change some major things in your life. The following are just some of those No-No’s:
Visit our "Resources" page to find more information about Syringomyelia.