Carries Chiari Connection

One step at a time....we will find a cure...we will be able to understand and educate doctors, surgeons, employers, schools, the general public and many more! Together we can make a difference! Thank you so much for your support and your contributions!

Patients with CM1 (Chiari 1 Malformation) may experience no symptoms. When symptoms are present, they usually do not appear until adolescence or early adulthood, but can occasionally be seen in young children. The majority of patients complain of severe headache and neck pain. Other common symptoms are dizziness, vertigo, disequilibrium, visual disturbances, ringing in the ears, difficulty swallowing, palpitations, sleep apnea, muscle weakness, impaired fine motor skills, chronic fatigue and painful tingling of the hands and feet. Because of this complex symptomatology, patients with CM1 are frequently misdiagnosed.

Chiari: (CM1) A serious and rare neurological disorder which can be genetic or acquired. 

Facts:

Chiari is a herniation of the cerebellum through the large opening in the base of the skull (foramen magnum) into the spinal canal. The herniated tissue blocks the circulation of cerebrospinal fluid in the brain and can lead to the formation of a cavity (syrinx) within the spinal cord.

Patients with CM1 may experience no symptoms. When symptoms are present, they usually do not appear until adolescence or early adulthood, but can occasionally be seen in young children.

The majority of patients complain of severe headache and neck pain. Other common symptoms are dizziness, vertigo, disequilibrium, visual disturbances, ringing in the ears, difficulty swallowing, palpitations, sleep apnea, muscle weakness, impaired fine motor skills, chronic fatigue and painful tingling of the hands and feet.

Women are affected three times more often than men.

Current estimates range from 200,000 to 2 million Americans with the condition

Approximately 3,500 Chiari operations are performed each year in the United States.

MRI (magnetic resonance imaging) is the most effected way to detect CM1

The decision to treat patients surgically requires a detailed consultation between the patient and physician

Research has shown that surgery can improve symptoms for about 80% of patients, but fails about 20% of the time.

Chiari can place a tremendous physical, mental, emotional, and economic strain on patients and their families.

Complications associated with Chiari:

syringomyelia (SM) is a neurological disorder where a fluid-filled cyst ( syrinx) -develops inside the spinal cord.  This cyst can grow over time, causing the spinal cord to expand and stretch nerve tissue.  Eventually, the syrinx can cause permanent nerve damage and paralysis. 

Causes of syringomyelia?
 About 30%-50% of people with Chiari also have syringomyelia.  Syringomyelia can also form after a spinal cord injury (SCI), such as from a car accident or fall; this is called post-traumatic syringomyelia (PTS).  PTS can form months or even years after such an injury.  Syringomyelia can also be the result of a tumor or mass in the spinal cord. 

When a syrinx forms

Over the years there have been several theories as to why a syrinx forms (mostly dealing with the effects of a Chiari malformation on cerebrospinal fluid flow), but none have been universally accepted or proven.  One current theory states that the cerebellar tonsils act like a piston and beat down into the spinal area with every heartbeat.  This piston motion then forces cerebrospinal fluid (CSF) into the spinal cord itself, where it forms a syrinx.  However this theory does not account for evidence that the pressure inside a syrinx is higher than outside and that syrinx fluid does not exactly match CSF. 

What are the symptoms of syringomyelia?
Because the syrinx is putting pressure directly on nerves, the number one symptom associated with syringomyelia is pain.  Many patients report severe pain in the neck, upper back, and shoulders.  Doctors refer to this as the "cape effect" of syringomyelia - meaning pain in the area where a cape is draped over the shoulders.  For patients with a syrinx located in the thoracic region of the spine, the pain may be in their chest, stomach, or lower on the back.  In addition, many people with syringomyelia lose strength in their arms and legs and develop numbness in their hands and feet.  Additional symptoms include trouble regulating body temperature, abnormally stiff muscles, and loss of bladder and bowel control. 

syringomyelia can cause and lead to paralysis:

If the symptoms aren't severe, doctors may recommend just monitoring the situation with regular MRI's and treating the symptoms individually.  However, if symptoms are interfering with quality of life, are getting worse, or if the nervous system is being impaired, doctors may recommend surgery.  The most common surgical treatment, performed by a neurosurgeon, is known as decompression surgery.

16mm Herniation

Before Chiari Decompression surgery

A large number of people ask about the size of their herniation and want to know how many mm are in a cm.  So here is a little help with the conversion:

Update:  I had surgery on January 7th! ...Please click http://www.carrieschiariconnection.com/mydiary.htm to read my diary entry for more info. Thank you all for your love and support through-out my recovery!!

Everyone who has Chiari and also the Chiari Decompression surgery responds differently.  Not everyone has the same outcome and should ALWAYS talk with their neurosurgeon to make sure this is the best decision for you.  It's important to know what can be achieved through surgery and what are the risk involved.  Also, it's important to understand that surgery is not a cure.  Surgery normally is performed to decompress the area where the hindbrain and other parts of the brain that are being harmed due to Chiari 1 Malformation.  This can but does not always increase the function of CSF flow which may have been blocked also due to the Chiari Malformation. It's important to understand the possible outcome of your surgery by a licensed professional Neurosurgeon before making a decision.  Also, decompression surgery is not always done the same between all neurosurgeons and it's VERY important and your RIGHT to know how much your neurosurgeon knows and understands about Chiari.  Ask: How many Decompression Surgeries have you performed? If your neurosurgeon is a caring and professional person he would not be offended by any questions and would take the time to completely explain everything to you until you feel comfortable.  Decompression surgery is NOT a minor surgery! Please visit http://video.google.ca/videoplay?docid=326561660545641575 to see and learn more about Decompression surgery. You can also try typing in the following information into your search engine:

Be sure to join in with raising awareness by passing on Chiari info....forward your favorite Chiari website (could be mine..lol) Educate your friends, co-workers, family..etc.  Lets not wait for September before we raise awareness.  It's important to do all year around!! Please visit my guestbook and add your story or info to the forum section.  Remember, you can create your own topic in the forum section...Ask if you have any questions.

"Raising Awareness One Step At A Time..."

~Carrie