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I was recently diagnosed with chiari I and was hoping to get some encouragement or tips from those of you who have been diagnosed before me. I have a long complicated story but I'll try and keep it brief. Six months ago I had sudden intense dizziness and it felt like I was going to black out. In the weeks following that begin to develop balance problems, shaky vision, intense headaches behind my eyes, heavy head, tinnitus, and many more. I was diagnosed with an inner ear infection and began vestibular rehab. Throughout the weeks and months I was not getting any better and my doctors did not believe me. It was extremely difficult to convince them to do an MRI and a host of other tests as I "looked fine." Everything came back normal thankfully but on my original brain MRI my neurologist noted mild chiari of just 3mm. He said it was probably not a contributing factor but told me to go see a neurosurgeon for another opinion. The neurosurgeon did not think it was significant but wanted to do a CINE study and another MRI. I recently got the results back and they did indicate that now I have chiari of 6 mm and also the cerebral spinal fluid is dampened around that area. I believe that my problem is most likely started with inner ear damage from my infection, but since my cerebellum is already under stress this is why I'm not getting better and why am not compensating for the damage. Or we could be completely wrong and even though mild, the chiari is causing all my symptoms. I have also developed Pots syndrome throughout this nightmare.
I am hoping for a positive encouragement as I don't want anything else that will scare me, but if those of you who have been diagnosed or especially those of you who have had corrective surgery have advice I would really appreciate it. I am wondering if anything triggers symptoms that you have noticed because I do have days that are much worse than others. Also if some of you could talk about some of your symptoms and if it was a difficult journey to get a diagnosis and a doctor that would listen to you. I am only 23 and my life is on complete hold right now. It's been a constant fight with my doctors to believe that I really truly feel terrible and that this is not stress related. I feel like I'm finally getting close to answers and to having a solution to all of this but would appreciate any advice!
Also, was there a triggering event that lead to your symptoms? Thanks in advance
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