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 Male/47/overweight but otherwise good health
I have had a headache and face pain (left temple/eye/jaw region) for over 4 years. It varies in intensity, but is constant. I also have had pulsaltile tinnitus for at least 3 years. In Oct of 2006 I went to a neurologist because occassional left side facial numbness was added to the mix. I had an MRI and the only note was "mild cerebellar tonsilar ectopia suggesting Chiari I (5-7mm)". At the time I was told that this was insignificant. He gave me some meds for the heachache and sent me on my way. My mother has had daily headaches most of her life so I figured I was destined to the same fate. Meds do not relieve the pain.
For the past 12 months I have been trying to get a new eyeglass prescription. I have been to 4 optometrists and have had 8-10 different prescriptions. So far every time I get the new glasses they don't "work". I am now convinced that my vision in my left eye somehow changes from day-to-day.
Thinking that my vision issue may be related to my other symptoms I began to do some research. Most of what I came up with pointed to IIH/PTC. Then I saw some links of increased intercranial pressure to Chiari malformations and I remembered the results of my last MRI.
I went back to the neurologist and he dismissed my "layman's" evaluation within the first 2 minutes of our 8 minute exam. He said I wasn't an obese female and I did not have Papilladema (he did look in my eyes). He again dismissed the Chiari and said it was likely that we were missing a TMJ issue. He did schedule me (next week)for an Angio MRI to check for blood vessel restrictions.
My main concerns when going in to see him were my failing vision and an airplane trip I am scheduled to take the middle of Feb. Some of what I've read about increased CSF pressure warns about flying. The neurologist told me that my problems were not neurological in origin and that it would not be a problem to fly.
I'd love to be confident in his findings. Believe me I'm not anxious to have an LP or cranial surgery. I'm just not convinced, but not sure what to do???
Regards,
Rick
Answer Hi Rick.
Thank you for your question, I have Chiari Malformation too like you my Neurologist stated at 5 mm it was not signifent and mild form of Chiari. I could not accept the DR diagnose and found a specialist in Chicago, I took the 5 hours trip by Air to see him only to find out I did need surgery, long story short I had surgery and was told my skull was so thin the DR could of cute it with his finger nail I was also told if I waited 4 to 6 more weeks to have my surgery the Dura would of open on its own.
Rick there is no mild Chiari whether it is 0 mm or 30 mm, I have met people with 0mm Chiari their symptoms far worse then others with increase mm.
I can tell you your vision has to do with Chiari, People with Chiari are known to get psuedo-Tumor ( False Tumor) they develop from increase fluid pressure in your brain with out proper flow through your brain and spine causes Psuedo-Tumor which can cause vision problems.
If you have extra CSF on your brain flying could cause headaches even more pressure on your eyes.
This is just my opinion, I would seek out a specialist who is well known for treating patients with Chiari, I also feel if you are having that much vision change you do need surgery before symptoms get worse.
This is a link to our web site and my sons journey to receive the proper medical help he needed for his Chiari 16 MM. http://icanlearn.homestead.com/monkeynoseenodo.html
Please feel free to email me if you have further questions, Best Regards, C.L.Fowler
