I was recently diagnosed with Cerebellum Tonsillar Ectopia. (Sorry, there is no shorter word so I'll call it CTE). I had an MRI scan to determine why I was having seizures, and am improving with the help of medication. As I have browsed the internet, many reputable sources (NIMH, NIH, etc.) as well as recent scholarly sources were saying that the depth of the tonsillar herniation defined as 5mm> for Chiari Malformation Type I, and <5mm for CET did not matter as much as symptomology and treatment. I have over 22 symptoms for Chiari and possibly 2 more, which is way more than those suffered by someone with Chiari. I do not like the idea of self-diagnosis. I have emailed a couple of hospital websites that do surgery for Chiari patients. I am interested because my memory loss is quite poor, my depression is so severe (and very drug resistant) that I know I have to do something before I break. And I have read that these decompression surgeries reduce or alleviate many symptoms. Does anyone know of any good hospitals specializing in treatment for Chiari Malformation Type I which would be well suited to assess if surgery is viable or necessary?

Hi,

Try these boards:

http://neurotalk.psychcentral.com/forum71.html -- Arnold Chiari

or

http://neurotalk.psychcentral.com/forum88.html -- General

Mari

Hi,

Most of us here focus on bipolar issues. We probably cannot answer those questions for you. Here are some thoughts:

Sometimes, your insurance company can you send you to a hospital that does specialized procedures.

Also, you can call any huge regional teaching hospital associated with a med school / university. They can be helpful with information I hope.

I googled this "facebook Chiari Malformation Type" and found a facebook group that might be able to connect you to information.



M

My bad. I was misdiagnosed with MDD at age 19, right after a time when I had gone through a few manic episodes and lost considerable weight in part due to constantly self-medicating so to speak. Later when I was diagnosed with Bipolar Disorder Type I, I lived with that for many years, and still do. This latest MRI by a neurologist has raised suspicions that my mood disorder may indeed be caused by the increased intracranial pressure due to restricted cerebral spinal fluid flow is a common symptom of Chiari Type I and Cerebellum Tonsillar Ectopia. I have some concentration and focus problems. Sorry I did not include this information earlier. The one thing that does excite me is that perhaps there is a surgery that may alleviate or eliminate the depression, and I wonder if it could actually eliminate the bipolar disorder after all these years of suffering. I am probably deluding myself, but I need hopre right now.

Also, thanks for the links!

I remember reading about that surgery years ago when I felt that I had Chronic Fatigue. If it is still being done, you can find someone.

M