Chiari Malformation Community
finally have an appointment!!
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finally have an appointment!!

I haven't been on here in a few weeks because the more research i do, the more horrified i am. I finally got an appt at the chairi institute(in long island) on Friday. I am so happy and scared out of my mind at the same time. I just want this all to be over with, but i know that this is really just the beginning. Im scared that i will need surgery. Im scared that i won't need surgery and there won't be anything that they can do. Im concerned with The amount of money this will all cost since they are out of network for.my insurance. Anyone have any advice.
8 Comments Post a Comment
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620923_tn?1426651955

  Hi...take a deep breath...take one day at a time and wait to see what they say....we can psyche  ourselves out.....

Are u going to have testing done, or is this just a consult?
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1306714_tn?1327260680
I am wishing you the best on Fri.  I know it is scary to have this appt, but as Selma said take a deep breath and know at least on Fri you will at least be a little closer to getting answers.  I'll be thinking of you on Fri and hoping you will get the answers you need.  I suggest making a list of questions so when you go you will make sure they get answers.
Linda :)
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4320028_tn?1365818075
Thanks for ur support! !
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3060676_tn?1371241540
I do take things one day at a time. It keeps me sane! I try to deal with things as they happen. You cannot change the outcomes of anything by worrying, so let those things go until you need to handle them. Letting go is a tricky concept to learn, but it relieves stress and anxiety!
Good luck at your appointment!
Rhea
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Avatar_f_tn
I am in the same place!  I was just told today I have chiari malformation and have to get a test on Monday and then see Neurosurgeon on Friday.   I am also freaked out about what all of this means.   Have you had other health problems?  I had spine fusion in Feb 2012 and a total joint replacement of my Jaw in Dec 2011 and now this!  

Good Luck to you!
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620923_tn?1426651955

  Hi and welcome to the Chiari forum.

This is a very scary journey, but know u r not alone....

With all ur issues, the fusion and a joint replacement in ur jaw, have u been told what caused those issues? Many with Chiari also have related issues, RA, EDS,  and these issues can affects joints....

Do ask the NS u see about related issues like syrinx's, ICP,.POTS , sleep apnea, scoliosis, even our blood levels for vitamins and minerals and thyroid....

Good Luck Monday and do keep us posted on what u find out.
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4320028_tn?1365818075
Saw ns today. Got my chiari dx. My variation was worse than what the original neurological had seen. . Surgery is my only option. Will be scheduled after holidays...
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1925822_tn?1333709217
great u have a diagnose at the end and u know whats going on, although it is absolutely no good news...but running around feeling like u r going insane is definetly not good neither. Good luck and keep us posted
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