On June 20, 2012, we found out that Sarah, a normal, "healthy" 8 year old has Chiari Type 1 Brain Malformation with the size of her herniation being approximately 18-20 mm.
Chiari Malformation is defined as a serious neurological disorder where the bottom part of the brain, the cerebellum, descends out of the skull and crowds the spinal cord, putting pressure on both the brain and spine and causing many symptoms.
Sarah has had what we thought were childhood migraines most of her life, and would vomit if over tired.. she was misdiagnosed for years but finally in May 2012, we were sent to a neurologist who ordered her first MRI and the Chiari was discovered. She had brain decompression surgery July 20, 2012 at UCLA.
There is NO "cure" for Chiari, Sarah will live with this for the rest of her life, and may in fact need further surgeries. We were just given the results of her 2 month post op MRI's and her post MRI does not look much different from her Pre op one.
We have decided to seek the help of the Chiari Institute in New York, where they specialize in Chiari and all related disorders. Upon reviewing her MRI's the Chiari Institute informed us that Sarah MUST have another surgery. It appears from the MRI's that she may have Basilar Invagination (Basilar invagination occurs when the top of the second vertebrae moves upward. It can cause the opening in the skull where the spinal cord passes through to the brain (the foramen magnum) to close. It also may press on the lower brainstem. The brainstem is a stalk-like part of the brain that connects the main portion of the brain to the spinal cord.) as well as Chiari, and the herniation from her Chiari HAS NOT improved. The reason is that at UCLA instead of doing a regular Posterior Fossa Decompression, which is defined as removing the bones in the skull to relieve pressure, they actually placed the bone BACK IN after performing the duraplasty and the C-1 laminectomy. NONE of the pressure in Sarah's brain has been relieved and her symptoms are now worse than before surgery. She used to have symptoms every 2 months or so, now it is every day.
Our Insurance has DENIED our request to go to the Chiari Institute in New York and see the specialist there that can help Sarah in every aspect of her diagnosis and provide her a quality of life she deserves.
We appealed the denial to go to the consult and they denied that. They have informed me I should be "happy" they allowed me to go to UCLA and have to stay with them.
We only want the best for Sarah so that she can lead as normal life as possible, she wants to go to college and she wants to be a brain surgeon to help others like her. If this continues, she won't even be able to go to school let alone hold a job, she can't make it through a day of third grade without a headache that knocks her down for several hours.
We ask from the bottom of our hearts, help us get our baby girl to New York to the specialist that can help her and help relieve her of the symtoms, they can't cure her, there is no cure, but they can relieve the symptoms and we can hope and pray she can have the life she is meant to have.