About Connie Fowler Expertise I can help with questions on Chiari malformation and related disorders like ADHD, Hidden learning disorder, Autisms, Tethered cord syndrome, Pseudo-Tumor, Spina bifida, Syringomyelia, Hydrocephalus, I went four years with not getting proper help for my son with Education and Medical issues. The Chiari type I malformation is a rare, neuromuscular deformity at which most Neurosurgeons believe it is present at birth. The brain exists in a cavity surrounded by bone. The brainstem normally sits in a funnel-like cavity just above the spinal cord. The problem occurs when the posterior fossa is not developed properly. Instead of the brainstem sitting in its proper space, the brainstem is pushed downward through the skull, causing pressure on the cerebellum and spinal cord
Another concerns is the normal flow of CSF through this area because the cerebellum are pushed into the opening of the base of the skull meeting the spine can cause obstruction to its natural flow.
(This downward displacement of the cerebellar tonsils is called the Chiari malformation.)
Experience December 2000 my son went in for brain decompression his Filum released (Tethered cord syndrome) as these are not a done deal surgery and we have years of doctor appointment and possible more surgery's, my heart and soul is in the understanding and research of this condition that the Doctor said my son was born with, as I am finding out this can be a genetic disorder as my self I have been diagnosed with Chiari and my oldest son has Scoliosis which is a sign of Chiari malformation.Because this is a rare disorder not to many people know of it or understand the disability that can come with it if left untreated, this is my goal to bring more awareness and be a support to those who have been told they too may have Chiari Malformation.
Organizations The Organization that I belong to is Our Chiari kids, Keeping kids healthy, Child care network,
Education/Credentials Basic child care resource, Child developement, Child Behavior,
Reaching to new heights in the research of chiari Malformation.
http://icanlearn.homestead.com/monkeynoseenodo.html
Neurology (general) - Impediment of CSF Flow in Arachnoid Cyst Area (post-fenestration)
Expert: Connie Fowler - 4/13/2005
Question My 14-year-old son was diagnosed 2 years ago with a very large arachnoid cyst in the posterior fossa. Soon after, a craniotomy fenestration was performed here in Atlanta and the severity and frequency of Ryan's headaches was much better until around 8 months after the surgery. The severe and frequent headaches returned.
Ryan wakes in the mornings with severe headaches, can't fall asleep at night because his head hurts so much -- basically, he almost always has a headache. He is now on 500 mgs of Diamox daily, which has helped some, but has not been a "cure".
Ryan's neurosurgeon is adamant that Ryan's anatomy is fixed and says the most recent MRI (2 weeks ago) looks fine. A myelogram last May showed communication of the CSF, though the neuro-radiologist wrote, "At the posterior aspect of the posterior fossa is an apparent linear density at the inferior aspect of the supratentorium extending inferiorly to the superior vermis, which appears to limit free passage of the intrathecal contrast."
He went on to write that, "a sharp delineation between the superior posterior fossa, which posteriorly shows layering intrathecal contrast material, and the less contrast-opacified quadrigeminal plate cistern and also demonstrates greater opacification of the interpeduncular ambient suprasellar cisterns. It also shows refluxed contrast material into the lateral ventricles, fourth and third ventricles."
Final Findings: "Free communication of the posterior fossa CSF space with the lumbar cistern, through the pramesencephalic cisterns and the suprasellar cistern. A residual anterior/superior arachnoid cyst wall limits the free flow of intrathecal contrast to some degree; however, there is no isolated CSF collection within the posterior fossa. There is some impediment of flow of CSF by the anterior/superior wall of this cyst, of uncertain significance. "
Could this impediment or obstruction in the CSF flow cause Ryan's headaches? From all the research I've found online, ANY impediment of the CSF flow and/or absorption can cause problems, so I don't understand why the neurosurgeons don't see it that way.
Do you know of any specialists in CSF flow? When I asked our neurologist about it, he said it over his head. The neurosurgeon will not answer my questions and says that everything is fine the way it is. Are there any doctors out there that specialize in CSF flow and CSF flow pathway? Thank you so much! :)
Answer My personal opinion is yes this impediment or obstruction in the CSF flow can cause Ryan's headaches
It is hard to say why your Neurosurgeon cannot or will not see that this is or can be the problem.
Through my sons battle with medical issues and the doctors stating my questions and concerns had nothing to do with his Chiari I new in my heart they were wrong and did not stop till he got the help he needed in which meant we had to travel to Chicago to receive it.
David M. Frim, MD, PhD:Associate Professor of Surgery and Pediatrics
Chief, Pediatric Microsurgery. http://www.uchicagokidshospital.org/physicians/david-frim.html
Note we live in Oregon yet the only answers we found and they key to help my son way going out of state.
Another great Pediatric Neurosurgeon is Dr.Ben Carson. http://www.neuro.jhmi.edu/profiles/photos/carson.jpg
My best advice for you might be to seek help other then the Doctors you are seeing sending them your story along with medical records and Scans.
As a Mom listen to your child and heart not what others think might be going on.
Best regards Mrs.Fowler
