Chiari opinion

[cash242]

As I go through this chiari journey I have found it very difficult to give a quick explanation of chiari. My parents whom have been one of my greatest supporters asked me last night how they can explain what I have easily to people they know. What are your quick explanations?

[raven11111]

I love the big brain and being very smart!

[jiggle93]

Love the size 9/10 explaination!!!!
and I agree, I always try to make it humorous at first with people I know.
Jiggle93

[jenshead]

I say what linnielou says!  People feel less bad for me if I can immediately laugh it off.

So I'll crack a joke about my brain being too big because I'm so smart, then I say no really it's the other way around...my head is too small for my brain, it's a birth defect.  Usually people will ask the next obvious question of 'does it cause problems?' to which I say little more than 'yes but you learn to deal with it as best you can'.  I don't offer any explanation other than that unless they ask.  In my experience the medspeak makes people extremely uncomfortable so words like 'head' and 'brain' are good enough!

I also like the size 10 brain in the size 9 skull explanation.

[STL5]

I can so relate to the coughing in line-borderline choking badly.  I always say just give me a minute or hold up my hand if I can't speak.  I hope that it doesn't happen too much for you.

[raven11111]

On television a I heard a doctor that to me, made a great, simple description. He said it is like having a size 10 brain in a size 9 skull. I do of course go further with the explaination, but once someone can actually imagine a scenerio it seems that they "get it more".  Not 100% effective, but worth a try.

[cash242]

Thank you all I really like all of the explanations....love the milkshake and glad to know I am not alone in my difficulty for quick answers.

[jiggle93]

funny to see this on here! I was just at Target tonight purchasing a few items with the kids. I have caught their head cold and started having a coughing fit at the check out. I was trying to hold onto the counter with one hand, and cover my mouth with my other arm. The checkout girls eyes were the size of softballs and she asked me if I was alright.  In an instant I thought to myself, how am I going to say this so she understands, but also just kind of throw it out there like a no big deal kind of way? Soo, I just looked at her and said, Yes, I'm fine. I have a brain disorder and when I cough it builds up pressure in my head and the csf gets interupted. she nervously smiled back and thanked me for shopping. I turned to walk away, and thought to myself-FAIL!!!!  I should just learn to say nothing!

[linnielou232]

I told my grandkid's that Grandlinnie is so smart my brain doesn't fit in my skull.   LOL.... It is wonderful that your parents want more infor.  I have explained in detail what Chairi is because I want those who love me to understand.  They also watch out for me and have saved me in some sisuations.  So being infor is so good for others to understand and also helps get the word out of what Chairi really is.

[sunnyset]

I've told people that my brain is too big for my skull and is lying lower in the skull, toward the spinal canal and that this causes disruption of csf flow causing headaches, etc.

[selmaS]

  Hi...well I say it is a malformation of the skull that forces a portion of the brain onto my spinal cord and brain stem, causing HAs, and other neuro issues like balance, vision, swallowing,and cognitive....

If they have questions I give them more, but that is what I start with : )

[ChiariWolf]

A very good question! One for which I've not found an easy answer either.

I have two answers:
    1.> for those who either don't really want to get into it or I don't want to
          get into detail with I just say "Due to a birth defect the brain is pushed
          into the spinal canal encroaching on the brain stem" That's it unless it  
          seems more is wanted then I move to #2

        2.> I use number 1 and explain how this like when you are trying to Drink a nice milkshake from a straw and then somehow a chuck of frozen strawberry gets stuck in the straw. This is what CM is like except it can at times block your CSF flow creating abnormal pressure.

Some close friends want to know more just to understand. I don't go any further with most but a few will ask more questions after explanation #2. Those are the ones you know really care.

Pretty generic, but hopefully it will help somewhat. Hey, frankly I'd feel fantastic to know your parents care enough to ask. That's pretty cool.

CW