What is a ACM? 

        Also known as Arnold Chiari Malformation (ACM). Most children with these malformations who do not have Spina-Bifida will have the form known as type I (ACM 1). Essentially the cerebral tonsils crowd the outlet of the brainstem/spinal cord from the skull on its way to the spinal canal. 

Known symptoms that result from this crowding can include headaches, neck pain or pressure, funny feelings in the eyes, arms and/or legs, stiffness, ataxia, drop attacks, difficulties with swallowing, gagging, sleeping, reflux, vomiting, seizures, eye pain, head banging.  Because of the crowding a Chiari may also be responsible for frequent  ear and sinus infections.  There is evidence to suggest a Chiari is the culprit for developmental disabilities  including Autism in many children. When the diagnosis is suspected a MRI scan can confirm the diagnosis. These malformations will not be seen on on plain x-rays and usually can't be seen on CT's. It has been reported quite often that chiaris were not even noted in radiologists reports, and often ignored by doctors as insignificant when they are. Doctors tend to use the length of herniation to determine whether the chiari is significant and ignore the thickness, which is of equal importance as the tonsil will block the flow of cerebral fluid in the brain.  

In general the symptoms of the type I malformations are less severe than that of the type II malformation. Left untreated, the crowding of the brainstem and spinal cord can lead to very serious consequences including paralysis and death.  It can also lead to the development of syrixes which may further injure the child's spinal cord and function.

There are several surgical options in treating Chiari malformations. Basically the operation is one of un-crowding the area at the base of the cerebellum where it is pushing against the brainstem and spinal cord.  Most children who have the surgery do quite well and have an improvement in their Autistic symptoms. 

Who should have an MRI?

Symptoms of  Chiari that may be present;

      Headaches including Migraine, Choking, Reflux, Vomiting, Vertigo, Dizziness, Neck pain or pressure, Coughing, Turned eyes,  Numbness, Tingling, Seizures, Sleeping difficulties, Apnea, Rage, Head ridge.   

What age is the best time to have the MRI?

      There seems to be no ideal age to perform the MRI study or decompression surgery.    Older children are more apt to lie quietly for the MRI test.  Age is a consideration when determining whether a child will need to be sedated for the MRI.  The child must be able to lie still for several minutes at a time.  Most facilities will have walkmans  or earplugs available; the equipment makes loud banging noises and the test can be long and tedious. If sedation is absolutely necessary, then how the child is sedated is important.  The risk of sedating children should always be considered.

To  avoid repeat procedures and post operative complications a neurosurgeon's experience and expertise is most important. As with any major surgery there are serious risks with this surgery and post operative recovery.

In a  survey of parents of children with Chiari (52) children with Chiari Malformation. 60% of this group reported that their child had developmental disabilities, nearly 25% reported their child was either Autistic or had Autistic traits prior to decompression surgery.  Recent statistics are 1 in 250 children are diagnosed with Autism in the U.S.   5  in 10,000 are diagnosed with Chiari Malformation. 

Communities

"Our Chiari Kids" "Autism Chiari Link and Autism Friends  offers support to families of children diagnosed with these conditions. Membership here is free but donations are needed to keep the sites running as Community Zero now charges a monthly administration fee. Autism Friends is currently in need of funding to make access available to all. Limited entry and/or memberships is available thru Community Zero. Please contact me if you can make a small donation to it

http://www.communityzero.com/autismchiari

http://www.communityzero.com/autismfriends

http://www.communityzero.com/ock

Forums:

Braintalk http://brain.hastypastry.net/forums/index.php?referrerid=148

ASD Rainbow Forum http://pub99.ezboard.com/basdrainbow

Links:

Duke Geneticists Unraveling the  Tangled Web of Autism
Author: Renee Twombly

 http://news.mc.duke.edu/newsrel/pagemaker.cgi?1DUN 0990.txt
 

Autism and Chiari Type 1 Malformations  
Author: Wolpert, Enteline, Cuccaro, Donnelly, Ravan, Abramson, Wright, Speer, Vance
http://parkinson.duke.edu/research/chiari.html 

http://www.wacma.com/
http://www.chiari.com
http://cpmcnet.columbia.edu/dept/nsg/PNS/ChiariMalformation.html
http://www.ninds.nih.gov/health_and_medical/disorders/chiari_doc.htm
http://www.angelfire.com/hi3/mwa/chiari.html
http://www.syringo.org
http://www.asap4sm.com
http://www.yvy69.ukgateway.net
http://groups.yahoo.com/group/chiari
http://www.neurosurgery.org/health/patient/detail.asp?DisorderID=20