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
Question I am a 35 year old female and have had back problems my whole life. AS a child, I was told that my leg aches were "growing pains." AS a teen, I was diagnosed with kyphosis, lordosis and a slight case of scoliosis, so I wore a brace for 2.5 years. I look normal and walk normal, but have unusual pain in my legs and sacral/hip areas and I was determined to find the cause. A year ago, a doctor finally thought to have an MRI all the way to the tailbone done (no one thought of doing one below the L5 prior to that). Anyway, it clearly showed the tethered cord, which is probably from birth. It definitely paints a clear picture of a lot of things i.e. walking early instead of crawling, leg aches, tailbone pain, etc. Anyway, the pain seems to get worse and more frequent the older I get. I still want more children, but no one can tell me about the statistics and risks involved. (I have one child.) Also, I've read conflicting information about surgeries - some say the earlier you have it the better, others say the surgery is more successful when you're in dire need of it. I saw a doctor at Emory University in Atlanta, and am interested in a second opinion. First, I'd like your thoughts about the information I've presented here, and second, who are the leading doctors in this field, and how can I contact them? Thanks for your help.
Answer Good Morning.
I am sorry to say that doctors did not catch this problem when you were a young child.
I personal feel if you can have a micro surgery for this condition it should not affect you from having children. I have provided a link to my son Tethered cord surgery story and how simple it turned out to be. If you go back to my home page and favorite links this will provide you with some of the top specialist in this field. I would go to Dr David Frim he is wonderful and get right to the root of the problem. http://icanlearn.homestead.com/children2.html
Please feel free to email me with anymore question.
Best regards Mrs.Fowler
