2 year old just diagnosed with chriari

My 2 yr old has been having severe headaches that lead her screaming in pain resulting in vomiting. All of this started in March 2018. Recently, her balance has been a bit off and falling a lot. She had an MRI and this is what the report says “Cerebellar tonsils terminate at least 6mm below the foramen magnum and demonstrate mild pointed configuration. Findings suggestive of mild Chiari I deformity. There is a small 4mm T2 hyperintensity lesion in the left cerebellum without restricted diffusion, magnetic susceptibility, or enhancement. This may represent nonspecific focus of gliosis or demyelination secondary to remote insult, but other lesions are not excluded. Uncertain etiology.” The soonest I can get into a neurologist is the end of August, I have no clue what any of this means and my daughter is having headaches more frequently. Tylenol and Motrin do not help her and I’m so lost on what I can do. Thank you in advance!

Dear simmonslt,
I don’t know where you live, but I do know that here in NC, there are pediatric Chiari specialists at Duke University hospital. I was told this by my own neurosurgeon; he said he did ONLY Chiari decompression surgery of patients 18-yrs old and up - whereas all Chiari patients 18-yrs old and under he referred to Duke. Again - this may be geographically out of your way! But - I have met a 6-yr old who had the decompression surgery at Duke after 5-years of severe epilepsy symptoms - and she is normal, now. Hope an pray you find good help for your little one!

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You and your daughter will be in my thoughts and prayers. I’m 13 and was just diagnosed with chiari, also with horrible headaches and balence problems, along with a few other issues, and I hope your journey is easy and your little one gets relief soon. Good luck

Im in Pennsylvania but I’m willing to travel for the best care for my baby girl!

Thank you! also praying for your journey as well!

Dear simmonsIt,

I just can’t imagine what it would be like to have a 2-year old with full-blown Chiari symptoms! My heart aches for you! For me, the agony of Chiari symptoms was a massive nightmare, and my symptoms didn’t show up until I was 52! A little 2-year old doesn’t know what’s going on - other than it hurts - and “Mommy! Fix it!”

I Googled “Pediatric Chiari’s Duke”, and the results were good. Duke has a pediatric neurosurgeon that does specialize in Chiari decompression… a Dr. Fuchs. When a neurosurgeon’s resume actually includes study and work in “Chiari’s Malformation,” that is a rare and good thing! I’ve had adult friends who have had their decompression surgery done by neurosurgeons whose resume doesn’t mention a thing about Chiari’s - and they end up more messed up than when they started. Anyway… sounds like Duke is worth checking into more deeply. (I found my Chiari neurosurgeon through "Google.’ Turned out, my neuro-doc was only a 90-minute drive from where I currently live! THAT was convenient.) I am not sure about pediatric care - but I know there is also a “Chiari’s Institute” in NYC - Long Island to be exact (I think), and Chiari’s care is all they do. But again, I don’t know if they do pediatric Chiari’s. Something to research. (Might be closer to you.)