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.
Expert: CONNIE FOWLER Date: 1/6/2008 Subject: childs surgery for chairi 1
Question My son is scheduled to have decompression surgery on 1/28/08. We have known about his chiari for 1 year. He has at least an 8mm+ herniation. His symptoms are balance & coordination problems, hand tremors,poor fine motor skills, speech (he talks a lot but it is often hard to understand him), and just recently started waking us up telling us the back of his neck, head hurt (we never told him anything about headaches before because he never had a single one), and now he says he has tingling or funny feelings in his feet! Are these chairi related? We decided on the decompression surgery because he knows (smart boy) that he can't make his fingers grasp like they should, and he knows that he has poor balance...we just want to give him the best chance at aquiring these skills. My FEAR is that this surgery will cause him to have memory loss and he won't know who we are or that this surgery will change the kid he is...he never complains about being ill or anything he is always happy- he just endures so much with learning problems, and not being able to hold a pencil or concentrating without the tremors...they want to open the dura to give him the best chance at being symptom free. That scares me. Can this surgery cause sever memory loss or complete memory loss? Aren't the risks quite low for this surgery in a child?
Thank You
Cheyenne Whalen
Answer Dear Cheyenne Whalen. I am so glad you emailed me with this concern. My son and I both had this surgery with opening the dura and it help all our symptoms.
Like your son mine too had all these symptoms and yes surgery did help. I would not worry about memory loss if you have the right DR your son should have no long term concern. In some children/adult not having surgery cause symptoms to become worse and some permit damage.
This is a link to our web site it explains everything we went through and I think it will help you. http://icanlearn.homestead.com/monkeynoseenodo.html
Please feel free to e-mail any time.
Best regards C.L.Fowler
