Chiari Malformation Community
I'm so afraid to defend myself.. Should I be? What can I do?
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I'm so afraid to defend myself.. Should I be? What can I do?

I've had Chiari my whole life, I had the "fix" (bull$&*t) when I was 7 but have developed problems again as I've gotten in a wreck about a year ago and bumped it again recently which makes me even more of a wuss when it comes to wanting to speak my mind or stand my ground, I live in a small town so I feel like If I **** off the group of friends I have, who will I hang with? My family doesn't understand me.. I just feel so alone and pretty much dead in this world. Any advice at this point would just be great..
Tags: Chiari, Advice
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Avatar_m_tn
and the more posts/replies I read on this fourm the more tripped out I am becoming of the current symptoms I'm having again / now im thinking theres more in store : / I go back to my neurogolist tuesday and I'm scared ********... I don't even know how I'm gonna figure out doing all this without insurance.. im tired of being/feeling like a *****.. my life feels like a living hell sometimes that now one else understands cause theyre not in my body.. I got so many ****** up things wrong with me that I have trouble explaining and getting out and my family and friends just blow it off like its just me being a pothead.. :( how do I get out of this ****** slump?!?!?! does anyone else feel my pain or am I completely alone in this world????????
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620923_tn?1405964489

Hi and welcome to the Chiari forum.

No, u r not alone...there r far too many of us that feel much like u do.
I am sorry a Dr gave u the impression there was a "fix" for Chiari...as it is a malformation of the skull so u will always have Chiari but the surgery is done to restore CSF flow and slow progression.

There are some that have had multiple surgeries....not knowing how old u r now, I have no idea how long it has been since u had ur first surgery.

It is also possible that something else is going on, mayb an underlying related issue and not Chiari...

Since u do not have ins, u may want to look into the clinical trials....see our search this community feature to find the link to see what trials are going on and to see if u qualify.
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Avatar_m_tn
Thank you so much for the reply.
Hopefully I figure something out in the next two days because I have an appointment on tuesday scheduled I'm hoping I get in and there is a underlying issue but then I got my mind running on what that could be.. I was 7 when I had the surgery and I'm 19 now. I got in a wreck at 17 that brought back some problems then bumped my head in alaska about a month ago and now everythings off, my legs falling out from under me, headaches, memory and speach problems, there's a few other things not really specific that I can't remember that I've just kind've thrown too the side as normal.. like seeing dots for a longtime when I look at light. All these symptoms I remember when I was a kid but like I say I was in 2nd grade when I had the surgery so I don't really remember alot.. I just wanna be normal and stand my ground.. I'm afraid if I open my mouth **** will hit the fan and I'll be in a wheel chair or 6ft under... it's bs.. :(  
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Avatar_m_tn
oh.. and when you sit down at certain times do you ever feel like you completely leaning to one side or the other after you stand? **** happens to me and doesn't go away for hours sometimes.. ***** with my vision and my head too..
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620923_tn?1405964489

  I still have vision issues, and at times can feel off balance but it depends what I was doing and I know some of that r from my related issues/conditions.

U should have another MRI since u hit ur head and u were in a MVA...find out what is going on....if CSF flow is fine and no obstruction is found look into the related conditions etc .
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