By the way... this purple ribbon, I found via "The Good Search's" images! I think it is so fitting! This is the site where I found the ribbon & what the zipper head means!! (Careful... it's a touching story!!)
Some of this blog will be speculation or things I've received from an email... If it's fact, I'll back it up with a link. (Like I always try to!!)
Ok, I'll try not to bore you!
ACM = Arnold Chiari (pronounced KEY R EE) Malformation. It is basically a malformation of the brain. By definition from Wikipedia it occurs in children AND adults. HOWEVER, it is something you are born with!! Most of the time it's not diagnosed at all!! See this link at the World ACM Association site. (WACMA)
It is supposedly a rare condition... however, I have a feeling it's more common than they think... only because so many are afflicted with headaches & neck pain! HOWEVER, just because you have headaches & neck pain does NOT mean you have ACM.
It's found only by a CAT and / or MRI scan. Someone emailed me & said that doctors will just tell you that you have it & tell you it's nothing to worry about... because they would be obligated to teat you for it & to do so, may mean risky brain surgery. (Keep reading....) I feel this is the reason why it's classified as rare. But that is just speculation!!
Best way for me to describe ACM & how it feels is this "visual" statement... Imagine you have an orange and have a string in the middle of it hanging down... now visualize that orange sitting on top of a soda pop bottle & imagine trying to pulling it down through the bottle with the string. Can you "see" how squeezed it is in the neck of the bottle. Well, that's what an ACM patient's brain is doing!! Imagine now, how that would feel.
Ok, here, I found a picture to give it a little more clarification...
Do you see how the brain stem / cerebellum is so far down??
Another thing is... I think that my Hypothyroidism is related some how to this! As my sister put it... it's no doubt, because the pituitary gland is probably being "smooshed"! Also, some emails I've received said the New York ACM Institute has mentioend there may be a connection!!Now, how does someone cope with such an ordeal?? Well there are several alleviation tactics.
If it's bad enough, then there is surgery... Yes, brain surgery. Decompression surgery to be more specific.
I, for one, do not want to have to go through this! It's risky to say the least! Not to mention it's not a cure, like some surgeries!!
Some people have gone through multiple decompression surgeries, with little or no success! Then there are those who have had tremendous outcomes that they are able to lead a normal life! (I get this from the 2 groups I belong to here in Yahoo 360 land... & some of the stories I've read via research!) The one with the picture of the guy with a tattoo on his head is a great group!!!
If you want more information, the WACMA site has a lot! So does the New York ACM Institute site.
Or you can, use your favorite search engine & type in: Arnold Chiari Malformation... or just Chiari. You'll be amazed, as I was, of all the information on this so called "rare disease".
Now you know why I am saying I'm exhausted all the time... or if I say I am having a bad "ACM" day!! It's a medical condition! I'm just glad to finally know why I am the way I am!!!
Now, if I can just get my hubby to realize that I am not faking or "acting" to get out of ... whatever... then life will be much smoother!! (Maybe I should print out the graphic above!!)
Now, I have a question for you... but I am not going to put it in a poll, because I'd like you to leave your comment in detail...
If I were to write a book about this & how it's affected me, would it be something you would buy and/ or recommend? I would write it in the same way I write my blogs... as if I am "talking" directly to you... I guess that's the broadcaster in me!
So, did I bore you? (Ok, so that's TWO questions... forgive me!)
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