Chiari Online Support Group

Vegan Chiarian, not much "pain" yet

I’m 42. 12 years ago thought I had MS, got an MRI, doc told me my brain was perfect and made me feel crazy. Turns out I had 4mm herniation then. My symptoms went away, and I was great until May 2017. I think that I caused a leak, with my obsession of back flexibility. I’m huge into pole dance,competitions and such. Well, I was until everything went south. Dizziness, blurred vision, light sensitivity, tingling in all 4 extremities, cognition & memory problems, and fatigue. I was in great shape, and this hit me suddenly. I’m a software engineer, and normally my memory is fantastic. So, enter the doctors.

June 17- 7mm
July 17- 4mm
Dec 17- 4mm.

I went vegan right after this started. I’ve never had much pain or headaches, maybe I’m lucky, or maybe my anti-inflammatory vegan diet helps. I haven’t had many of the really bad symptoms in awhile, but I’m definitely not normal yet. The fatigue is the most constant, vision blurriness comes and goes, and occasionally I’m dizzy or have balance problems.

Lately Ive had weird sensations in my thoracic spine, but no doctors have listened to me and found any reason (besides me asking) to scan my back. I see the neurosurgeon for the first time next month. I’m hoping he looks at my back. I’ve been wearing a back brace for the last 6 weeks, and it seems to keep most of the neurological symptoms away.

I’ve had anxiety/insomnia since I was a teen. I’ve been on mirtazapine for many years and that has always helped me sleep. I’m a little underweight, really hard to gain being vegan.

Anything I need to be sure to ask this neurosurgeon? I’m going to resist surgery as long as I can, but I’m worried about a syrinx, or possibly a spinal CSF leak. To my knowledge, no connective tissue disorders, but I do have dancer level flexibility, so who knows.

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