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Syringomyelia Rare Disease Awareness Education February 2019

Once a diagnosis is confirmed it is normal to feel a variety of emotions and it will take time to adjust to the new normal. Emotions may include the five stages of grief that can include denial, anger, bargaining, depression, and acceptance. Not everyone goes through them in any particular order and there is no time limit. Grief is as genuine and unique as the individual.

(Credit: The 5 Stages of Grief by Elisabeth Kubler Ross & David Kessler).

When you are a zebra you stand out from the crowd.

Let's face it....Syringomyelia is considered "invisible" because you cannot see it on the outside unless an individual is experiencing severe physical symptoms that require medical devices, etc. However it can adversely affect numerous body systems resulting in disability and medical complications that can include paralysis so it is serious and not a disease to dismiss.

Many are so weary having to explain it over and over again. Is anyone listening when we talk about our experiences?

Day to day descriptions of how Syringomyelia makes a person feel can include: "I feel like my body has been beaten with a baseball bat and it's on repeat every day" (cervical syrinx, thoracic syrinx), "I feel stiff and cannot stand for long periods due to severe upper and lower back pain"(cervical/thoracic syrinx), "I feel clumsy due to numb hands/arms dropping objects" (cervical syrinx), "Overwhelming sadness and longing to just be normal", "I feel like my sacrum is being crushed"(thoracic syrinx, tarlov cyst); "I feel a vice grip around my chest 24/7 and it never goes away"-Thoracic syrinx. "I feel like the tin man from the "Wizard of Oz" when he was frozen after the rain except there is no magical oil can for me so that I can move". Syringomyelia

Syringomyelia can affect daily life from sunrise to sunset. You are not alone.
Did you know? Many individuals with Syringomyelia report increased back pain when up moving around or performing activity that is relieved when lying down.
Many ask how can I even start tackling Syringomyelia with my medical team?
It's all about early identification, diagnosis, and prevention of potential complications. A multidisciplinary team approach led by primary care and neurosurgery is key! A comprehensive report of family history and head to toe baseline assessment should be completed. Then a neurosurgeon who is experienced with Syringomyelia and Chiari must determine if surgery is recommended based upon MRI findings and any other recommended testing. From there ongoing care should led by NS with primary care to perform repeat assessments, follow up testing, and referrals as needed.
MRI of the brain and entire spine is recommended when Syringomyelia is suspected to rule out Chiari Malformation and other underlying spinal problems.

What are other potential co-existing conditions and/or complications that can occur with Syringomyelia and spinal cord/nerve injury?

Central and obstructive sleep apnea have been reported in children and adults with Syringomyelia. A sleep study can rule out sleep apnea. There are existing successful treatments for sleep apnea. If a child or adult wakes suddenly gasping for air, snores loudly, breathes irregularly, or stops breathing several times during their sleep ask your doctor about the risk of sleep apnea. Untreated sleep apnea can result in heart disease and much more! Untreated central apnea can increase the risk of respiratory arrest.
Papilledema and intracranial hypertension have been reported with Syringomyelia. This can occur from the blockage of cerebrospinal fluid and rise in pressure around the brain. High CSF pressure behind the optic nerves is called papilledema. Untreated papilledema can lead to blindness. Symptoms may include blurred vision, headaches, nausea, and dizziness. When visual changes occur eye exams are important to rule out the risk of papilledema! Did you know that high pressure behind the optic nerves can be visualized during a noninvasive eye exam? IF papilledema is present, it can be the first red flag that further testing for the presence of intracranial hypertension is needed to help your medical team provide you with excellent care.
Syringomyelia can injure nerves connected to the "fight or flight system" of the body resulting in dysfunction of the autonomic nervous system. Symptoms reported can include persistent racing heart rate, shortness of breath, rapid changes in blood pressure, feeling faint when full, and more. There are effective treatments for autonomic dysfunction. Your doctor may order orthostatic vital signs to assess for changes in blood pressure and pulse lying, sitting, and standing taken 3 to 5 minutes apart. Tilt table testing can be helpful as well to confirm problems with the autonomic nervous system.
Medical Fact: According to the National Institute of Health: "Syringomyelia can cause moderate to severe chronic pain because it can damage the spinal cord and compress and injure nerve fibers that carry information to the brain and from the brain to the rest of the body."

What does Syringomyelia look like on MRI?

A syrinx is a syrinx no matter how small!
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Approved MAB 2019

Created By
Worldwide Syringomyelia & Chiari Task Force
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Credits:

Created with images by Gellinger - "zebra crosswalk animals" • Janko Ferlič - "untitled image" • geralt - "sadness alone being alone" • Wokandapix - "tin man oz wizard of oz" • rawpixel - "untitled image" • TeroVesalainen - "question mark hand drawn solution" • TheDigitalArtist - "idea innovation inspiration" • jarmoluk - "mri magnetic resonance imaging diagnostics" • smengelsrud - "sleeping child napping" • David Travis - "Getting things in focus" • rawpixel - "untitled image" • Luis Galvez - "Cry"

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