Syringomyelia Details

Expanded Description

Syringomyelia (Sear-IN-Joe-My-E-Lee-Uh), or “SM”, is a chronic disorder of the spinal cord which consists of the formation of a syrinx (a pocket of cerebral-spinal fluid sometimes referred to as a cyst, hydromyelia, or syringohydromyelia) inside the spinal cord cavity. The syrinx may expand and elongate as it encroaches on the spinal cord and can easily cause deterioration of the nerves.

SM is sometimes progressively degenerative and typically has a slow onset, however, symptoms can very easily rapidly progress due to strain or by trauma to the spine. It can easily yield very painful neurological symptoms of varying intensities and at varying times. In fact, most patients with SM are quickly dismissed as being psychosomatic simply because they are unfamiliar with the disorder and it’s symptoms.

Prevalence

8.4 ( Per 100,000 Population ) [Source]

Causes

A syrinx may be caused by Trauma to the spine or by a Chiari I Malformation (key-are-E), or “CM” which is a congenital malformation of the hindbrain area of the skull that allows the brain to protrude beyond the base of the back of the skull. For reasons just now being understood, this causes a disruption in cerebral spinal fluid, the primary known cause of SM. It is currently estimated that CM results in approximately 70% of all currently known SM cases, however, due to the lack of knowledge of SM in adults, that number is likely to be inaccurate.

Disorder Symptoms

There are several erratic neurological symptoms that may affect people with Syringomyelia.

Name	Description
Severe pain	Severe pain, including pain induced vomiting.
Loss of feeling	Temporary or permanent loss of feeling in various parts of the body.
Tingling or throbbing pain	Sharp tingling or throbbing pain in un-isolated parts of the body
Loss of hot and/or cold sensations	Loss of hot and/or cold sensations in some areas of the skin.
Hot and cold sweats	Sudden hot and cold sweats.
Shooting pain	Shooting pain in the arms and/or legs.
Weakness	Weakness and/or wasting of the upper extremities.
Headaches	Persistent extremely bad headaches.
Stroke	Stroke
Blindness	Blindness
Paraplegia	Paraplegia
Quadriplegia	Quadriplegia
Vertigo	Dizziness

Diagnosis

The only way CM or SM can be diagnosed is with an MRI only as an X-ray is not capable of showing the presence of a syrinx.. With the introduction of MRI technology and more people surviving car accidents with spinal cord trauma these days, it is very likely that a large number of adults have trauma induced SM and are unaware of it. They may simply think they are just having back pain that just won’t go away.

Diagnostic Tests

MRI or CT Scans are the only way to identify Syringomyelia. An Xray will not show the syrinx.

We don't have any tests yet.

Disorder Treatments

Pain Management is the primary form of treatment as pain is the primary symptom. Some cases may be candidates for shunting the syrinx to drain it.

Other non-surgical treatments include craniosacral therapy.

We don't have any treatments yet.

Prognosis

There is no cure, however, surgery may yield either temporary (in most cases) or permanent releif. Those who are not a candidate for surgery may be treated with pain management where controlled substances are commonly used.

Some cases will yield no pain and, consequently, no treatment will be necessary other than periodic MRI scans to monitor the progression of the disorder.

Tips for Living with the Disorder

Name	Description
Get regular MRI Scans to Monitor Progression	You should have MRI or CT Scans performed at least once a year or every 6 months to monitor the progression of the condition, if any. If your neurological symptoms appear to be getting worse it would be a good idea to have an MRI or CT scan as soon as possible. If you have no symptoms you may opt to go for a scan at least every 2 years due to the severity of this disorder.
Social Security Disability	If you have been diagnosed with Syringomyelia you should consider immediately applying for Social Security Disability the moment you are symptomatic or receive the diagnosis. This disorder is considered a disability by Social Security.
Consult with a Neurologist immediately upon diagnosis.	Upon diagnosis of Syringomyelia, an immediate consultation with a neurologist that is familiar with SM is advised. Knowing the status of your condition should be your first step.
Adjusting to a new lifestyle - Acceptance	When you become afflicted with this disorder you will likely have to adjust to a new lifestyle, one of less physical activity most likely. You may be unable to do many of the things you used to, which can be very frustrating. Instead of being angry and upset, understand this is a process, alot like grieving over the death of a loved one. You will likely go through the same stages which include denial, anger, self pitty and then acceptance. You must learn to accept the changes and limitations you now have. If you need to speak with someone call the Syringomyelia Foundation (http://www.SyringomyeliaFoundation.org). They have counselors and case managers available to listen and provide advise and guidance for your particular case. Sometimes just talking to someone who knows what you are going through can make a huge difference.
Be Your Own Best Advocate	You will likely face medical staff that has no clue what Syringomyelia is. Therefore, you should be as informed about the disorder, and your own case, as much as possible. Keep a binder of your medical records including a list of your current medications so that you are able to share the information with specialists or hospital staff should you have complications and require medical care. This will be particularly handy in the event of a medical emergency. Many of the neurological symptoms of SM are unknown to most medical professionals so educating them about your case (using your binder) will only help you receive better care.