Is Chiari REALLY all that rare??
 

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:

http://hosted.mediasite.com/hosted4/...playerType=WM7 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 :)

Chiari
 

IMHO I think there are more and more people that have it . Also I dont really think its Brain surgery . They remove pieces of your skull not your brain. They are not touching your Brain . So why do people say its Brain surgery . Take care Liz

When my NL and I first discussed Chiari, he told me that it was NOT rare, but actually fairly common. What caused it to be "rare" is that it didnt become widely and accurately diagnosable until after the invention of the MRI around 1985.

The fact still remains, that it is an uncertainty how many people are living with a Chiari Malformation who still show no symptoms or who are living with a misdiagnosis of MS or Parkensons. I know that after my diagnosis, when word got out, 5 more people were diagnosed (or rediagnosed) with CM. Two previously with Parkensons and another with MS. All five had CM surgery, and within 6 months the two "Parkensons" patients and the MS patient were both off half the meds they were previously taking.

I'm a firm believer that part of the 'rarity' of CM is mis-information and part of it is due to mis-diagnosis.

Just my two cents.

God Bless Us Everyone!!!!

Dawn

oh, and Raz, yer question got me to thinking, so I looked it up.

Brain surgery is defined as....

"Brain surgery treats lesions of the brain and the structures around it through an opening (craniotomy) in the skull (cranium)." excerpt from MedlinePlus Medical Encyclopedia

So 'technically' CM surgery IS brain surgery. Because you have a hole cut in yer head to help relieve pressure in the CSF flow, which is a structure surrounding the brain. :wink:

Now we know :D


God Bless us Everyone!!!!

Dawn

surgery
 

well actully in my case the CSF was not blocked . But thanks for the info of brain surgery .