CHIARI MALFORMATION COMMUNITY
Update/NS next week.

Update/NS next week.

Ok....i don't have a specific question. I guess I want to up date you on where I am to date with Chiari.



After many years, Many different Doctors, many symptoms of a varied nature, many misdiagnoses and many medical testsI finally get to see a NS next tuesday. I will not bore you with my story but you can read it if you so wish on my profile journal. It has taken....two family doctors (wasn't happy with the first) a cardiologist, an ENT specialist a Neurologist and a NS and loads of cash to get a DX of Chiari and Syringomyelia. Now the fun begins, I don't know much about the NS I am due to see however my choices are limited as we here in Ireland have nine NS per a population of almost five million people and CM being an un common illness I wonder what are the chances of finding a Chiari Spiciest.....

So for now I am going to see what this NS has to say and take things from there.

Ray
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Hey Ray...Good luck and thanks for the update!!

All to similar a story too...doesn't matter where we r .

"selma"
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Thanks selma, it's kinda frustrating, scary and exciting rolled into one
Ray
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I know just what u mean...just watch u don't get disappointed.That happens alot.

"selma"
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I have had those in the past as well, the NL refused to discuss it, said it was a neurosurgical issue not neuromedical so every thing I know about it  I got from here and the internet.
Ray
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Ray....How far to u have to travel to get to the NS u r going to see tomorrow?
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Hi selma, I live about 200 yards from the hospital so a few minutes walk lol!!!

having the usual pre appointment jitters at the moment but it should be ok.....i hope

Ray
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ray I am happy you are finally getting the help you deserve.  one thing you could always do is find a world famous specialist and offer for your NS to contact him if he is unfamiliar with the case many (if they are one of the good guys) would be willing to learn more adn he should be willing to learn as much as he can before he goes cutting into things.


I will continue to keep you in my prayers please update how things go : )
Angela
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ray ray!!!!! what wonderful news!  a new dr for you to play with!  lol!  well, play nice and don't hurt him to bad if he doesn't listen....regardless of what he may think of himself, he is not a god!  i print out some info on chiaris just in case he knows nothing of it....but i hope you do not need it, that he is knowledgable and informed and most important, both willing and capable of helping you!
i'll keep you in my thoughts and prayers, dear leprechaun, as always!!!
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I know u r freakin out Ray...know we r with u in spirit : D

"selma"
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Hi Ray

will be thinking about you and will say a prayer that all goes well with your appointment!

Barb  :)
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