I was recently diagnosised with Chiari I, my hernatation is 4-5mm and my CINE MRI showed good csf flow! Now I know the level of tonsillar herniatation doesn’t always have to correspond with the severity of the symptoms, but what I am confused on is if the hernitation isn’t blocking the flow and there’s no syrinx and no obvious crowding of the tonsils what’s causing the symptoms? I only ask because since my last neurosurgeon consult I have gone down hill rapidly and very significantly! Any info or input would be greatly appreciated! Thank you!
I saw a neurosurgeon about a week ago, and he said something that really comforted me. He said the mri’s are 2 dimensional and we are 3 dimensional creatures. He said although mri’s are great tools, they don’t always tell the whole story. He said that is why he was proceeding on and working off my symptoms. I LOVED that. It was the first doctor that listened to ME and what I was experiencing. It felt so good to not have to ‘prove’ my problem to him. Instead he wanted to hear what I was feeling and experiencing to see where we were with chiari. Turns out, my herniation is about 5.6 mm but my symptoms are way beyond his typical chiari patient. Mine is effecting my nerves which can be irreversible. I guess it’s not so much size, but how bad is it effecting you physically.
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Thank you!!! My neurosurgeon seems to think my sleep apnea is causing most of my problems, because it’s untreated! As you mentioned the herniation level doesn’t directly cooralate with the symptoms and like yourself mine are crazy and spiraling out of control! Each day is truly a struggle and with the complexity of the conditions makes it that much harder! Time, that’s what they want! Time to figure it out, time to see what helps, time to see what’s changing, and so much more! But time has proven to be an enemy, each day I fall apart more and more by the stack of conditions piling up! It’s not there lives being ruined, it’s not there sanity being lost… I don’t expect over night but some level of compassion and caring would be awesome! Not just reviewing image after image and seeing the herniation that doesn’t typically get symptom relief after surgery, not that I want surgery… I just want help and to be able to be somewhat of who I was before again!