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Arnold-chiari malformation

Hey everyone,

I had an appointment with my neuro today to get the results of the MRI I had a couple of weeks ago. Turns out I have arnold-chiari malformation, a condition in which there is a downward displacement of the cerebellar tonsils, with a herination of 7mm. This is causing obstruction of the cerebrospinal fluid outflow. I had difficultly understanding exactly what he was saying at first, but once I did some research afterwards, it's starting to make sense. Because the herniation is only 7mm, he first said that it can be left alone for now, because he assumed I was asymptomatic. He just said I should have it checked fairly often. He finally asked if I experienced any numbing/tingling in my hands and feet. I said yes, but mostly when I come out from the cold (my fingers and toes are usually white, numb, and tingly). Then asked me if I had neck pain and localized headaches in the back of my head...yes. He explained that he would refer me to a neurosurgeon, as the treatment for this is surgery. He still thinks that I probably will not need surgery for this, and I hope he is right, but he said getting the neurosurgeon's opinion would be best. After doing some research on the condition, a lot makes sense (ringing in the ears, fatigue, dizziness....).

There were no lesions, no tumors, ...everything else looked okay. That means, there is no known reason for my seizures, and apparently this condition has nothing to do with why I'm having them. 

I'm a little scared right now...my head is kind of spinning. Just the thought of brain surgery terrifies me. 

Does anyone have this/know anyone with this?

Thanks

Comments

I have Arnold-chiari malformation. I also have absence seizures. I have asked many neurologists if my chiari is causing my seizures and they all say no. All the doctors say I don't need surgery. I even saw a specialist at Cleveland Clinic

My neurologist, as well, insists there's no connection between the condition and seizures...just an unfortunate coincidence I guess. I'm not quite sure how I feel about surgery. On the one hand, the thought of surgery scares the hell out of me. On the other hand, if I don't have it, I will always be afraid of it getting worse and something happening as a result of it. Do you have any of the symptoms associated with it?

I have dizziness and get headaches in the back of my head occasionally....somtimes I have weird symtoms that come and go like the side of my face will hurt and then the next day it will go away. Head hurts when I laugh,cry,yell just for a second like my brain is being squeezed.

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