American Syringomyelia & Chiari Alliance Project

Bridging Neuroscience & patient care

Esteemed Host of our
2025 Conference

Esteemed Host of our
2025 Conference

Dr. Brian J. Dlouhy

ASAP is pleased to introduce Dr. Brian J. Dlouhy as the esteemed host of our 2025 conference in Iowa City, July 21-24, 2025. Dr. Dlouhy brings us to the heartland of the USA, where diverse perspectives can unite to bridge neuroscience and patient care to advance research, treatment and hope for Chiari malformation, syringomyelia and related disorders.

37th Annual
Conference

Honoree
Dr. Arnold Menezes

Dr Arnold Menezes

We proudly recognize Dr. Arnold Menezes for over 50 years of pioneering advancements in the treatment of Chiari malformation and skull-based abnormalities. Within our specialty, everyone—and I mean neurosurgeons around the world—view Arnold [Dr Menezes] as the premier guy in this particular area of research and treatment. That’s why so many colleagues from all over the world refer their patients to Iowa.– Matthew Howard, MD, professor and chair of the UI Department of Neurosurgery

Meet Dr Dlouhy on our Virtual Support Session March 25, 2025 7pm. More info.

2025 ASAP CONFERENCE

Dr. Brian Dlouhy, pediatric and adult neurosurgeon, will host ASAP’s 37th Annual Conference in July 2025 in Iowa City, Iowa.

NEWLY DIAGNOSED

Have you been newly diagnosed with Chiari? See our patient resources, including 15 questions for your Chiari specialist, before your next appointment.

VIDEO LIBRARY

Our curated conference presentations provide insight into the latest neurosurgery research and are available to you for free.

Our Mission

To improve the lives of persons affected by syringomyelia, Chiari malformation and related disorders while we find the cure
American Syringomyelia & Chiari Alliance Project

CHIARI & 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.

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 the symptoms of syringomyelia.

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.