Writing For Ryan

What Are Chiari Malformations?

Chiari Malformation are congenital or acquired conditions  in which the brain stem is pulled down,  herniating through the foramen magnum (opening for spinal cord) and into the spine.

Symptoms

Severe, chronic, intractable pain with intolerable flare-ups,  nausea, headaches, fullness/hissing/buzzing/droning in the ears, muscle twitches and painful spasms,  dizziness, cognitive change and memory impairment, fatigue, and numbness and tingling are just a few of over one-hundred symptoms that are known to have significant quality of life implications on those who are afflicted.

Treatments and Interventions.

There is no cure for any of the levels (0-V) of Chiari Malformations.  Decompression surgery may help a patient find relief of some symptoms temporarily, but very few report lasting improvement. This is mostly due to medical ignorance, delayed diagnosis, and the failure to rule out comorbid conditions and diseases prior to surgical intervention.  

Many people find they are in need of a shunt, which helps regulate the flow of cerebral spinal fluid, post-decompression. Others, like myself, must undergo corrective surgeries to repair cerebellar ptsosis (brain slumping) when their original surgeon removed to much skull, leaving the brain without any support.

Multiple surgeries are often required to correct serious surgical errors that could have easily been avoided. Tragically, many patients die at the hands of the physicians they entrust to ease their suffering.

Awareness, education, and research are essential.

Effects on Individuals and Families

Patients afflicted with a Chiari Malformation are widely misunderstood and are often misdiagnosed with Fibromyalgia, Chronic Fatigue Syndrome, stress, migraine, autoimmune disease, and Somatoform disorders. Patients are blamed, ridiculed, treated as attention and/or drug seekers, and erroneously referred to psychiatric services, as well as routinely abandoned.  Many patients who are denied proper, effective, dignified pain management, find suicide to be a solution to end their suffering. The diagnosis of Chiari can be very personal and isolating.  There are often devastating social, familial, financial, and mental health implications associated with Chiari Malformations. However, the understanding and support so desperately needed by patients and caregivers is considerably lacking.

Diagnosis

Some patients wait decades to receive an accurate diagnosis (some Chiari Malformations are not discovered until post-mortem autopsy) and because this condition is progressive, many have experienced irreversible damaged to the brain, spine, and the autonomic system.

While there is no real understanding or established consensus  as to the cause of Chiari Malformations, it is estimated that Chiari Malformations affect one in one-thousand people. However, due to ignorance, we suspect this is a considerably-skewed statistic. For example, emerging research shows a direct correlation between Sudden Infant Death Syndrome and Central Sleep Apnea caused by brain stem compression in infants, but significant research is not being conducted.   

Our Mission

It is essential that doctors are educated on the importance of ordering a brain and spine MRI for every patient who presents with intractable symptoms associated with Chiari Malformation.  Delayed diagnosis leads to undue suffering and even death. It is our goal to assist in this education.

Another weighted goal of this film is to illustrate the emergent need for research that will allow for the development of a standard protocol in the areas of diagnostic testing, surgical advancement, and proper, effective, and unbiased pain management. By sharing our stories we hope to aid other important projects in promoting the awareness necessary to stop the disproportionate number of deaths in our underserved community.   If you would like to help, please CLICK HERE.

 

For further, detailed reading, please connect to Chiari Bridges Here.

 For further reading refer to: https://chiaribridges.org/

Arnold Chiari malformation (kee-AH-ree mal-for-MAY-shun) AKA A.C.M. is a condition in which brain (brain stem) tissue extends into your spinal canal. It occurs when part of your skull is abnormally small or misshapen, pressing on your brain and forcing it downward.

 

A.C.M. Can be present at birth (congenital) due to fetal skull malformation or due to injury (acquired) later in life.

There are many theories for why A.C.M occurs, however, there are no established, widely-accepted causes for this skull malformation.

 

Chiari Malformations are considered to be “rare”, occurring in 1/1000 people.

 

However, we believe that these statistics are inaccurate due to misdiagnosis. Often times Chiari Malformation is only discovered postmortem during autopsy.

 

 Emerging research shows a connection between Sudden Infant Death syndrome (S.I.D.S.) and A.C.M as sometimes Central Sleep Apnea occurs-The brain literally does not tell the lungs to breathe during sleep-leading to premature death in infants and adults.

 

Central Sleep Apnea is often confused with Obstructive Sleep Apnea and many Chiari Patients undergo unnecessary surgical procedures to correct throat and palate issues that do not really exist.

 

Five types of Chiari Malformation:

 

    Type I: This is by far the most commonly observed type in children. In this type, the lower part of the cerebellum -- but not the brain stem -- extends into an opening at the base of the skull. The opening is called the foramen magnum. Normally, only the spinal cord passes through this opening.

                  Type I is the only type of Chiari malformation that can be acquired.

   Type II: This is usually only seen in children born with spina bifida. Spina bifida is the incomplete development of the spinal cord and/or its protective covering.

                  Type II is also known as "classic" Chiari malformation or Arnold-Chiari malformation. In type II Chiari malformation, both the                      cerebellum and the brain stem extend into the foramen magnum.

 Type III: This is the most serious form of Chiari malformation. It involves the protrusion or herniation of the cerebellum and brain stem through the foramen magnum and into the spinal cord. This usually causes severe neurological defects.

                Type III is a rare type.

 Type IV: This involves an incomplete or undeveloped cerebellum. It sometimes is associated with exposed parts of the skull and spinal cord.

                Type IV is a rare type.

Chiari 0: There are Chiari specialist that believe A.C.M. Can be present even though no notable herniation exists. The criteria for determining Chiari 0 is through taking the patient's health history and symptoms into consideration during the neurological work-up.

 

For more information, please check out the following resources:

 

NINDS

 

NORD

 

Wikipedia

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