Providing research, education, and support for syringomyelia & Chiari malformation since 1988.

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Speaker Topics

Craniocervical Instability
Dysautonomia
Neuroradiology
Scoliosis
Chiari Malformation
Ehlers-Danlos Syndrome
Pain Management
Syringomyelia
CSF Leaks/Pressure Disorders
Intracranial Hyper/Hypotension
POTS & Orthostatic Hypotension
Tethered Cord
Dilated Central Canal
Mast Cell Activation Syndrome
Treatment/Surgery

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Our Mission

We strive to improve the lives of persons affected by Syringomyelia, Chiari Malformation and related disorders while we find a cure.

CHIARI MALFORMATION & SYRINGOMYELIA

What is Chiari Malformation?

Chiari (Kee-Ar-ee) Malformation is a condition in which the lower portion of the brain (the cerebellar tonsils) descends into the upper cervical (neck) region. This can lead to pressure on the brain and spinal cord, resulting in a variety of symptoms.

Learn more about Chiari malformations.

Chiari Malformation Diagram

What are the most common symptoms of Chiari malformation?

This condition can present in numerous ways because it affects the brain, spinal cord, and related structures. Symptoms vary based on the type (e.g., Chiari I, II, III), severity, and whether other associated conditions are present.

  1. Headache, particularly precipitated by coughing, straining, sneezing, etc. (valsalva maneuver)
  2. Balance problems, which may impair walking
  3. Dizziness
  4. Eye symptoms, most commonly to-and-fro movements of the eyes, called nystagmus
  5. Change in quality of the voice
  6. Swallowing problems
  7. Sleep disturbances

Learn more about Chiari symptoms.

What is Syringomyelia?

Syringomyelia (sear-IN-go-my-EEL-ya)
is a chronic spinal disorder in which cerebrospinal fluid enters the spinal cord, forming a cavity known as a syrinx. The syrinx can grow over time and damage the spinal cord, which can cause a variety of symptoms.

Learn more about syringomyelia.

What are the most common symptoms of Syringomyelia?

  1. Motor – Muscle weakness, Increased muscle tone (stiffness or spasticity), abnormal curvature of the spine (scoliosis)
  2. Sensory – Decreased feeling in hands and arms, exaggerated sensation (hypersensitivity) in limbs
  3. Pain – Midline pain over the spine, burning pain in arms, over trunk and rarely, legs, Joint pain, particularly in shoulders

Learn more about syringomyelia symptoms.

How are Chiari & Syringomyelia Diagnosed?

The most definitive way to diagnose Chiari malformation (MC) and syringomyelia (SM) is through imaging studies, particularly magnetic resonance imaging (MRI). The diagnoses CM/SM have become more frequent, in part due to the improvements in brain and spine imaging by MRI.

View our handbook for more info.

How are Chiari & Syringomyelia Treated?

Patients with Chiari Malformation who do not require surgery are treated with a variety of therapies. These can include medications such as analgesics, anti-inflammatories, sedatives, anticonvulsants, antispasmotics, diuretics, and steroids. Evaluation by a neurologist to evaluate for other neurological disorders is important. Physical therapy may be of help in some patients and evaluation by a chronic pain specialist can also be helpful.

It is more or less recognized that the operative procedure for CM and SM is a posterior fossa (back of skull) craniotomy (opening) with possible removal of the upper-most portion of C1 (cervical laminectomy of the first cervical vertebra). The aim of the operation is to return the cerebrospinal fluid (CSF) circulation to as close to normal as possible.

View our handbook for more info.

FOR PARENTS

Chiari malformations, syringomyelia and their related comorbidities can be present at birth. Early detection is key when research suggests that early intervention in pediatric Chiari cases can prevent long-term complications.

RESEARCH

For Better Solutions

ASAP supports research grants and fellowship programs to advance studies on Chiari, Syringomyelia and related disorders. We are dedicated to fostering partnerships with the medical community to support innovative research efforts and improve patient outcomes.

EDUCATION

How to Advocate for Your Health

Advocating for your health when dealing with Chiari malformation, syringomyelia and their related disorders is crucial for getting the proper care and treatment you need. Click here for some key strategies to help you advocate effectively.

SUPPORT

You don’t have to face living with a chronic illness alone. Support is just a click away. ASAP provides a wide range of resources to help you navigate your journey with confidence and connection.

GET INVOLVED

You can make a difference today. Join us as a member, spread awareness in your community, host a fundraiser, or lead a support group. Every effort counts, and there are so many ways to get involved. Together, we can create a lasting impact!

FOR PHYSICANS

ASAP’s Medical Advisory Board is dedicated to supporting ongoing education for Chiari Malformation specialists and other medical professionals through our medical articles and research grant program. The ASAP Research Committee oversees funding for novel research projects concentrating on CM/SM and related disorders. The Committee reviews grant applications on a case-by-case basis.