About CONNIE FOWLER Expertise MAIN QUESTION ARE CHIARI MALFORMATION ,TETHERD CORD SYNDROME WITH RELATED DISORDER.
ADHD, Hidden learning disorder, Autisms, Tethered cord syndrome, Pseudo-Tumor, Spina bifida, Syringomyelia, Hydrocephalus,
Experience 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.)
Organizations The Organization that I belong to is Our Chiari kids, Keeping kids healthy, Child care network,
Education/Credentials 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.
Basic child care resource, Child developement, Child Behavior, Reaching to new heights in the research of chiari Malformation.
Question How rare is it to have both ACM and TSC?. Also could both of these be hereditary?
I am a 48 year old woman. In 1984 (age 24) I started having severe headaches. In 1995 (11years later)I had an MRI and then surgery for ACM (not sure what type as no info was available to me). For 24 years I have complained of sore legs, numbness and stiffness in legs, bladder problems and being constipated, also other symptoms of ACM, hoarseness of the voice, needing to swallow, chronic fatigue, sleep problems, palpitations, shortness of breath often passed off as panic attacks, excessive claering of the throat. The last 2 years I have noticed more stiffness and now stumbling and losing my balance. I am having an MRI in 2 days. My 24 year old daughter is also having numbness in her legs and hands as well as headaches when exerting herself such as rooler blading and cross country skiing. She has an MRI scheduled for next month.
Answer Hi ,Thank you for your question it is very common to have Chiari and Tethered cord syndrome and yes this is a inherited condition, My self and 2 out of 3 my boys have Chiari, One with Chiari and Tethered cord syndrome also had surgery for both condition.
My oldest boy has Chiari and scoliosis, and I have Chiari and scoliosis.
All the symptoms you are having are common with Chiari and Tethered cord.
I hope this help, Best regard, C.L.Fowler
