My 8yo has been suffering from headaches, usually 2-4 per month which is way more than my other son. Didn't think anything of it until it turned into a migraine the other day and resulted with him vommitting. Decided to take him to the pediatrician which referred us to TCH imaging and the diagnosis came back as 'chiari i malformation'.

We have an appointment with a neurologist but wondering if any of yal have ever dealt with this before. What should we expect?

Thanks in advance!

I am pretty sure your son will need to be followed by a pediatric neurosurgeon. From what I understand, type one malformations do not typically require any surgical therapy, but serial follow up and imaging to determine progress and CSF findings. All the best.

They will advise surgery if there is increased intercranial pressure or syringomylia of the spinal column, especially if there is neurogenic scoliosis or other peripheral findings. Swelling of the optic nerve on retinal exam is another indication for surgery. I've managed several of these over the decades, they do well after surgery.

Overall, 90% of these are incidental findings. They commonly get detected in people who have brain MRI scans for migraine headache. They can be associated with build up of spinal fluid inside the brain (hydrocephalus) or inside the spinal cord (syringomyelia).

Much of what the child neurologist is likely to do, in addition to a neurological exam, is ask questions to try to determine whether your child's headache is due to migraine or another primary headache issue, or if it is potentially related to increased pressure inside the head from the Chiari. What the imaging looks like will also guide the workup to one extent or the other.

I dealt with migraines when I was a child that almost always resulted in vomiting. I'd lie in my bed in horrible pain for hours until the vomiting brought relief. It sucked, but as I got older, they went away. Now it is very rare I get a headache. Not sure if it will play out the same in the case of your child but I hope it does.

Thanks everyone for the responses. We have an appointment with a neurologist next week and hopefully get to look at the MRI image itself.

Conversation came up with my wife on sport participation and thought I would share this interesting video.

I'm not gunna lie, I'm kind of excited I get to talk about this cause most people don't know what the hell Im talking about when I bring up a Chiari. So, with that being said…

I'm somewhat of a random case but I have a very large malformation and what I mean by that is mine sticks down through my skull 22mm. But, I'm 37 years old and still kickin so I've never opted to do surgery. I do have some symptoms and they did watch my syrinx for a year when I was a kid but it never changed.

I honestly never thought anything of it or ever went in for anymore imaging from like 9-12 (I can't remember exact age they found it) to age 36. My parents had been told it was a nothing burger so I thought the same. Well, I've been chasing some weird hearing problems for about the last 10 years and a ENT sent me to a neurosurgeon cause he noticed I had a pretty impressive Chiari. Neurosurgeon didn't think my hearing problems came from the Chiari but he said it wouldn't be unheard of if it did, just not worth operating off that one symptom. Anyways, I learned alot about Chiari when I went to see him and he was impressed I'd made it this far in life without needing surgery.

I was like your son and had really bad headaches when I was a kid but it was never linked to the Chiari. My headaches got better the older I got but I have terrible allergies, sinus problems, and asthma so it was attributed more to that. My reflexes and balance show symptoms of my Chiari playing a part in it but there again not enough to operate. I will get dizzy if I look up for to long or to fast. Lose my balance as well.

Best of luck to your son. I'm not sure where you live but I can give you the name of the neurosurgeon I went to, he seemed very knowledgeable about all of this. He's at the UT Dell Training Center in downtown Austin. I've been told the sooner you do the surgery the better cause you heal up so much faster when you're younger. Someone my age would struggle a little more with it.

Oh and on edit….as far as sports go. I raced stock cars from the time I was in my late teens on up into my 30's. I've often wondered if I took a hard enough hit or got the wall hard enough with some serious whiplash (I never wore a HANS device but a neck brace instead) if I might not have met Jesus. I'm sure any of that with my brain sticking down through my skull wouldn't have been good.

We see Chiari I in the ER frequently on CT scans that we do for other purposes. Pedi neurosurg's may differ, but the adult ones that we work with and have a good relationship with shrug these off. Say there's "nothing to do for them."