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 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.

Syringomyelia patients may experience:

  • Severe chronic pain.
  • Weakness.
  • 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. 

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. 

If you are in a car accident and settle or sign a release there is nothing you can do to reopen the claim. If you are making a claim against the insurer of the vehicle that hit you - you have two years from the date of the accident to issue a Statement of Claim. Once the Statement of Claim is issued you then have 6 months to serve the Statement of Claim. But once a claim settled and you sign a release there is no two year to reopen. Don't allow yourself to get victimize a second time at the hand of a lawyer. 

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?

  • 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.

Activities to avoid with Chiari Malformation and Syringomyelia

The 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:

  • NO neck stressing activities, such as roller-coasters, 4-wheeler, skateboards, horseback riding, motorcycles, wave pools, backpacking, falling asleep in chairs, extended reading with head bent etc.. Anything that “jars” your head and/or spine is a definite no-no. 
  • NO neck stressing sports, such as water skiing, snow skiing, snowboarding, sky diving, bungee jumping, diving, playing tennis, basketball, soccer, football etc. (Just trying to cover all the basics – you get the idea.)
  • NO contact sports.
  • NO Chiropractor! - Especially at the neck for Chiarian’s and for those with a Syrinx, no deep tissue in the area of your Syrinx. (The chiropractor should be well versed on Both CM/SM)
  • NO straining which includes straining to reach something, or even straining during a bowel movement. Take a fiber supplement every day if you tend to get blocked up. 
  • NO moving furniture or heavy objects around by pushing, pulling, lifting, or any other way. Pick up nothing heavier than a gallon of milk. I know – that sounds impossible, but keep that gallon of milk in the back of your mind.
  • NO moving around in the dark!
  • NO putting yourself into stressful situations or relationships. Try to relax, avoid noise and keep your neck muscles relaxed.
  • NO twisting your spine – try to keep a good posture with your spine lined up and straight.
  • NO bending over. Lower yourself to the floor by bending your knees – not your back.
  • NO sudden spinal/neck movements.
  • NO using the hair wash sink at the hair salon. Instead ask for the special tray that most hair salons have that are designed to accommodate people who are unable to bend their head/necks backward.
  • NO Lifting more than 15 lbs. when strength training or backpacking. Heavy lifting is generally not recommended especially if you have a Syrinx.
  • AVOID sleeping in a head down position.
  • AVOID cervical traction.
  • AVOID lumbar punctures, spinal taps or epidurals, unless it is a well-informed Chiari doctor....if a LP is drawn too quick it can cause the tonsils to herniate even further. Done incorrectly, this can be very dangerous for a Chiarian.
  • AVOID doing any kind of activity that causes you to bend your head backwards, such as: bending back to gargle, washing hair in the shower etc.
  • AVOID food with too much salt. Especially for woman during their premenstrual period.
  • DON'T participate in any physical activity that puts you in jeopardy of falling and or creating trauma of any kind.
  • DON’T try to keep commitments when you’re feeling badly. Listen to your body.

Visit our "Resources" page to find more information about Syringomyelia.