Ok, so we just came back from the NS and basically he said she doesnt need sx and he said he doesnt think she will have problems from this. he said based on looking at her mri he might even think that its the position that might cause her to look like she has a 4-5mm herniation and that it might not even be a true herniation. he explained that where the "herniation" is there is a lot of space and thats not typical for chiari and thats why he think this might be the way she was positioned in the mri. he also said based on her symptoms he doesnt think its from this. he said he has seen even cases where the kids had it then a couple years later didnt have it. I asked him how many kids hes seen and he said 100s and i asked how many sx he said prob 10 a year. he said hes going to report that to the neurologist and even suggest that he doesnt believe this is true case. oh an no restrictions... Im clueless.... both the neurologist and NS doesnt think she has this or is symptomatic.
my daughter has migraine like headaches from time to time, every once in a while. I dont have any specific times that she has it. she does NOT get headaches when she sneezes, coughs, bends her head, jumps, or any activities so far. she says she feels like gagging sometimes but its very selective. example, she gets it every Mon-Fri before school but on weekends she doesnt. the dr said this can be anxiety related and told me not to tie everything to chiari... well im gonna get a second opinion anyways.
any weigh ins here? has anyone ever heard of someone outgrowing chiari? or a misdx based on positioning in the mri?
After reading your post I'm so happy to hear your getting a 2nd opp. I had hernination of 5 to 7 and yes it was Chairi, and my NS stated that it doesn't go away it would only get worse with age. So your on the Chriain run around right now, but you will find the right NS that will help and guide you. I know how flustrating this can be and so discouraging. Thinking of you on your journey, but please keep pushing and keep being persistant and you will find the answers.Some Dr go by he size. Well mine was shaped as a cone so I wasn't getting any fluid to the brain,,so the lenght doesn't matter as much as the width. Wishing you a better appt, and better answers.
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