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Brain & Nervous System Disorders Message Board

Brain & Nervous System Disorders Board Index

Wow, thank you Scout and Cindy for all your info. and kind thoughts. I have suffered from lyme in the past and "neurological lyme" so sometimes my symptoms can get confusing regarding what is causing what. Living in the 2nd highest lyme disease state and being a trail lover makes me quite informative on lyme but this Chiari - well I am still digesting it and learning as much as I can about it so your information is so helpful!

The doctor I am seeing is a Neurosurgeon and specializes in Ped.'s Chiari. He stated from the very begining that he is VERY conservative in his treatment. Said he would not do surgery,even with decreased CSF flow and Syrinx if herniation was not over 5mm...

My biggest symptom is the headaches - sometimes in the back of the head but always turning into a feeling of pressure - like my skull is going to crack open. I was a professional duathlete and still try to compete in running races but I had to stop racing because of the horrible headaches and visual disturbances I would get when I would compete at a high level. In addition to the exertional headaches I sometimes get chronic flashing lights. These flashing lights come on only with exertion; coughing, sneezing, exercise, yelling and sometimes even taking a big deep breath (I have seen a Cardiologist and everything A-OK with the heart!). Changes in barometric pressure is the worst. I also have central sleep apnea which my doctor concluded was not accurate(?), I have tingling and numbness in my arm and and fingers, neck pain and fatigue. Now are all these from Chiari? Could be some lyme possibly but I still cannot help to think what is going on inside my head when I am trying to do something healthy for myself like exercise and I get such a pounding headache and a light show. I have other things that I do not even know are related to Chiari and I am hesitant to even mention them for fear of sounding like a hypercondriact(sp)....pain behind eyes, full ears, off and on dizzy spells.

I have the paperwork to make an apppointment at Great Neck -The Chiari Institute. Maybe that is the best thing to do at this point but the bottom line is I do not even know if I would even opt for surgery at this point. I am kinda processing as I am typing but maybe I need a doctor who is more informative and provides the level of explainations that I need - maybe that would make me feel more comfortable...

At any rate, thank you again for your responses!

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