Is Chiari REALLY all that rare??

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Is Chiari REALLY all that rare??

Postby LIZARD110366 » Sun Mar 16, 2008 11:56 am

Does anyone else ever wonder if Chiari is really as rare as we're being made to believe? I don't know about the rest of you, but I run across people all the time who either have it or are close to someone who does (family member, close friend). Not just on Chiari forums, too! They might not know the name of it, but when they describe it, I recognize it right away.

I'm wondering, also about this intriguing theory regarding autism and Chiari. My 13 yo son has both, and I am continually running across parents of kids who also do, or I strongly suspect they do, based on account on symptoms. I have hydrocephalus myself (congenital, dx'ed in infancy), and all my life, until very recently (last 5 years or so), I have heard it described as "rare," even by those who should know better. Is it possible that Chiari is in a similar category? Anyone have any thoughts on this? How about the Chiari-autism connection? I really believe there is one, and there was an eye-opening talk given at a recent conference that spent a fair amount of time on this: The last dozen minutes or so focus specifically on this. The presentation itself is about 35 min long, so if the last portion is of special interest to you, as it is to me, you can fast forward to about 20:30 and listen to that part of the talk.

LIZARD, curious about your thoughts :)
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Postby Sara » Sun Mar 16, 2008 5:53 pm

I couldn't get the link to work, but I don't think Chiari is terribly rare.
This article on our website suggests the prevalence of SM could be as high as 1 in 1300. Chiari is much more common than syringomyelia.

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Postby dtyree » Sun Mar 16, 2008 6:57 pm

I too, believe that Chiari is very rare. A lot of folks I meet and greet have no idea what I am talking about.

Sometimes, when we discover something we are not familiar with, all of a sudden everyone knows about it and it is everywhere.

An analogy. We get a new car that we have not seen before. All of a sudden while driving, this type of car seems to be everywhere. Probably some sort of phenomenen.

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Postby LIZARD110366 » Sun Mar 16, 2008 6:59 pm

Hey, Sara. :)

Thanks so much for writing me. I'm sorry about the link. :oops: I can try it again. ... erType=WM7 Please let me know what you think if you listen to it. I think it's the most promising yet to show any connection between Chiari and autism.

LIZARD, starting to feel vindicated! :)
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Postby LIZARD110366 » Sun Mar 16, 2008 7:06 pm

David, you're in Nashville?? I'm insanely jealous!! :D

Interesting analogy. I can see what you're saying, and I have certainly run into my share of people who are clueless about ACM, but I continue to be startled by the number of people who have it and who know others who do, especially those parents whose kids have it along with autism, as my son does. It's bizarre.

LIZARD, lifelong country fan :)
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Postby dtyree » Sun Mar 16, 2008 7:11 pm

Where do you live? (Sorry, but I even know where Alan Jackson lives, and have been by his house quite a few times)

When I first heard about Chiari, could not spell it nor pronoune it, took a while. But since then, I have run into a fair amount of people who know what it is, or know of others with it.

Kinda crazy.

Been called a "walking medical dictionary".
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Postby LIZARD110366 » Sun Mar 16, 2008 7:17 pm

It isn't locally, actually, but people I talk to within my hydrocephalus network who don't have Chiari but know people who do (and often don't realize they do until they describe it and I tell them that's what it is). Most of them don't know nearly as many folks who have hydro as I do, too.

LIZARD, outside Providence :)
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Postby angie7 » Sun Mar 16, 2008 8:17 pm

I believe that CM is rare, based on the latest data that I have read on it. Maybe you just run into a bunch of freaks :lol:

And with all the strange med problems that people have now-a-days, it may be something different that people are describing that sounds similiar to CM but really isnt.
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Postby pearland1 » Tue Mar 18, 2008 7:49 am

Chiari is not that rare. One in one thousand people supposedly have chiari. It used to be more 'rare' due to the fact that doctors could not see it. The use of magnetic resonance imaging has shown that more people have it than once thought. I am not sure if anyone truly knows how many people have chiari, but I saw an estimate of anywhere from 0.1% to 0.7% of the population in the US. That is a large range!

Doctors cannot do an MRI on the general population to do this though, because people can live with Chiari their entire life without symptoms. Some people have them and some people do not.

I do think that symptomatic chiari (headaches, etc.) is a totally different thing. Chiari with true symptoms is rare, and is probably a smaller incidence. Another thing that confuses the entire scenario is that Chiari or tonsillar ectopia isn't really truely defined with all physicians.
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Postby brianfsmom » Tue Mar 18, 2008 2:00 pm

My personal belief is that if you took any sampling of people, for example, all of the students in a given school, and ran their heads through an MRI, you'd find a handful of undiagnosed chiaris. And most of them would probably never have found out otherwise.

But we will probably never know, since this won't ever happen in reality!


I don't think it's as rare as it used to be, either. I have also run into people in my regular life who have relatives or friends with chiari.
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Postby jackiemb » Wed Mar 19, 2008 9:01 am

About the Chiari-autism link: My son was diagnosed with Sensory Integration Dysfunction long before we got the CM/SM diagnosis. A pediatrician once suggested that my son was autistic, because SID is one of the major indicators of autism. I'm also convinced that my son's SID is a result of CM, and he has improved since his decompression surgery. I don't know much about autism, but I can sure see someone with severe SID getting a diagnosis of autism (rightly or wrongly, I don't know).

Postby LIZARD110366 » Sun Mar 23, 2008 1:04 pm

Thanks, Jackie. :)

Drew showed classic signs of autism when he was dx'ed--screeching, grabbing my wrist and throwing it toward what he wanted, constantly lining things up, running off without any regard to danger, ignoring his name when called, lack of gesturing, lost language...I could go on and on. I have some SID but never had any trouble with language, and I have hydrocephalus. I know many kids who have hydro have language issues, so it wouldn't shock me at all to find out that this "autism" is mostly Chiari-influenced. All I have to do now is convince a nsg. :roll:

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Postby Beverley » Sun Mar 23, 2008 8:58 pm


It is interesting about the connection with the SID things and the Chiari. I am 44 and have never been dx with any of this but in reading what it was I was intreaged by so of the features.

Some of my main problems related to my Chiari are with my Balance/Gait/Walking. I am now 45 days post-op and am seeing improvement in these things. I still have a long way to go but some of my first symptoms were tings like Corrdination of movements. I had to quit bowling in the middle of a league season. I was about 35 a the time and had been bowling since I was 8 maybe.

But the other thing is, before I found out about Chiari and still now, I have sensory issues. I can walk in the grass but not on a side walk. I can actually walk almost normal in the grass even before my surgery. The problem was I could not walk on the concret to get to the grass. On the sidewalk, I still am having trouble walking. Carpet and floors are getting better but slowly.

As a child I was dx with CP, primarely because I was a 2 lb 10 oz twin born premature. I had the general wide gait and I walked on my toe, primarely on my left foot. Interesting that toe walkin is a sensory symptom too. I have since been dx with Dopa-Responsive Dystonia as my Brain MRI shows no sign of brain damage consistant with CP.

I am in the process of trying to find a PT that works with Neurological/Sensory issues also incorporating the DRD that I have also. So far it is a tall order, especially since I am 44 yo.

It is an interesting connection, I am guessing that alot of us walk a fine line for these types of conditions. But a fine line it is.

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