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Is it ok to let severe chiari symptoms go without treatment?

I have a confirmed diagnosis of Chiari.  I have not been able to get in yet to a neurosurgeon.I have had severe symptoms for over 6 months. I have been seen by er doctors a neurologist a rheumatologist and my primary care doctor. Even after a confirmed diagnosis of Chiari they did not feel it was important to go to a specialist. We had to got to the er and get copies of my scans and send them to the cornell university hospital begging for there help. The doctor there confirmed what the radiologist found. Even though I was at the er when the scans were done , the doctor told me I had some crowding in my brain that I was born with. When we tried to tell him no it had never been found before he said the doctors had not told. He sent me home. My head was huge. It was so swollen I took pictures of myself so people would believe me. My blood pressure was 59 over 69. I had fever, clear fluid coming out of my ears and inside my head I could hear a popping  fizzing sound. My head was hurting worse than I had ever had it hurt before. Yet sent home. I continue to have numbness tingling and  paralysis.  At times it appears I have had a stroke. This morning my head actually hurts worse. I am having difficulty with my vision. When I look at things with my right eye it is jumping around. My primary care doctor told me that we have thousands of neurons. So those being destroyed by the fluid build up will not make a difference. I finally have an appointment with a neurosurgeon in 2 1/2 weeks. I am seriously concerned I won't make it. Is it doing permanent damage? What should I do?  Please help me.
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Avatar universal
Yes, you can have permanent damage if you wait to long. Have you had a csf flow study? One NS blew me off until that showed blockage.. Then everyone listened. How frustrating for you! You need a new NS.
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620923 tn?1452915648
COMMUNITY LEADER

Hi and welcome to the Chiari forum.
Can you clarify what you mean by severe symptoms. Many have breathing issues, drop attacks, seizures etc...
There is more testing that needs to be done to check for a CSF obstruction, and ALL related conditions.

Unless your symptoms change, you should be fine to wait to see a Chiari specialist.
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