Aa
Aa
A
A
A
Close
Avatar universal

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..
5 Responses
Sort by: Helpful Oldest Newest
620923 tn?1452915648
COMMUNITY LEADER

  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 .
Helpful - 0
Avatar universal
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..
Helpful - 0
Avatar universal
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.. :(  
Helpful - 0
620923 tn?1452915648
COMMUNITY LEADER

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.
Helpful - 0
Avatar universal
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????????
Helpful - 0
Have an Answer?

You are reading content posted in the Chiari Malformation Community

Top Neurology Answerers
620923 tn?1452915648
Allentown, PA
987762 tn?1671273328
Australia
1756321 tn?1547095325
Queensland, Australia
Learn About Top Answerers
Didn't find the answer you were looking for?
Ask a question
Popular Resources
Find out how beta-blocker eye drops show promising results for acute migraine relief.
In this special Missouri Medicine report, doctors examine advances in diagnosis and treatment of this devastating and costly neurodegenerative disease.
Here are 12 simple – and fun! – ways to boost your brainpower.
Discover some of the causes of dizziness and how to treat it.
Discover the common causes of headaches and how to treat headache pain.
Two of the largest studies on Alzheimer’s have yielded new clues about the disease