I'm jackson, I'm 19 now and had my decompression surgery at 7 and have delt with chiari my whole life.
After the surgery at 7 I had major improvements and no problems until now in my later teen years as I've gotten into a wreck at 17, and just a couple months ago jerked my neck/head again on a air mattress. I've always had minor symptoms I've struggled with that I've kinda just began to blow off as normal with my balance, hand- eye coordination, speech, etc but it's all becoming worse. Since my 2nd blow to the head I'm getting head aches again, my legs are falling out from under me, I half the time feel like my body is completely tilted one way or the other, my arms are numb alot, I get random jolts or shocks almost like seziure like things that go through my body all the time which really trip me out because I've never had a seziure. It seems like the more I look up about chiari for comfort the more scared I get. Being a guy too with this rare condition it sucks because I can't defend my self, which now makes me even more afraid to stand up for myself because I want to avoid contact at all costs. No one under stands me not family, friends, doctors, nobody. It just stresses me out and makes me sad to the point of no return. I went down to wake forest baptist medical center again yesterday to try and see my doctor and I was stuck with some dip-$*@! physicans assistant who said he's been looking up on chiari and thinks I need a x-ray. -________- I went back after my surgery for 10 plus years once a year for MRI check-ups.. even I know a x-ray isn't going to show a fucking thing. I don't wanna become a pain-pill junkie like half my family but I hurt and feel so damn bad. I smoke pot to self medicate myself but even that has its downsides. I've had two jobs one cutting meat (which I about got fired from and had to quit because I couldn't cut a peice of meat straight to literally save my life) and another working on a solar farm which I also had to quit because I didn't have to coordination for it either plus that was around the time my headaches began to return, and if you've had the chiari headaches you know damn well theres nothing worse in this world. I just feel so alone and down and I'm tired of being in this slump. It's constantly leaving me in a extremely irritable mood and I hate it.. I want so bad to be normal and understood but it seem so impossible. Hopefully this was worth a shot and look forward to your responses
Hi jbird
So sorry that you are dealing with this and ignorant dr.s. I was diagnosed at 18 but all of the doctors always said that it was not a big deal and that my symptom were all in my head and not related. I finally was treated properly and had the surgery at 40 years old, only to be diagnosed with Ehlers Danlows syndrome (EDS)at 46. Which is common in Chiari patients, and causing returning symptoms.
I just wanted to let you know that you are not alone, and one there is one thing I’ve learned…there is no such thing as “normal” only varying degrees of “crazy”!!!lol! Hang in there and keep your chin up because stress just makes things worse! Try to stay positive!things do get better!
Barb
You know...you and I are a lot a like..I almost feel like i can here the intonation in your voice while reading how you feel and what you are going through. Your expected to be an adult like as soon as you hit 18... a lot of my family tells me "mind over matter ashley...we have faith in you.. have faith in yourself" and im doing that in the annoying stern condescending voice of no empathy. I find myself very frustrated with the lack of independence Im now facing when I was once on top of the world. I feel robbed of my life. Sometimes though.. I take a look back at my old life.. and the fun I thought i was having. But it wasnt until now that I started to really appreciate the small things in life. Dont get me wrong its hard but sometimes Im humbled by this chapter in my life, and I feel like God is using me as a vessel to test other peoples humanity and faith. So many friends and family I thought i truly had the meaning of. Now one of my wisest closest friends is an old war vet in an electric wheel chair that is similar to the one i had when i first got stricken with west nile. i met him while i was at the park feeding ducks. i myb would have never had a friend with such valuable life saving advice if it werent for this curse i call it. I grew up in a university town.. where my parents and grand parents were well known. the life i had before.. ipads... passat... 6,000 sq ft house.. all gone. my life has flipped upside down. its a long story but if you google Margaret Miales Highlands Ranch CO you will see a clip on 9news. but anyway Im a medicaid patient now and Ive never been treated so terrible and ignored when I have been through so much and have a condition that shouldnt be treated with a bandaid over a bandaid over a bandaid.. I want my life back. Ive gone through homelessness with this condition. Im still here.. and I am going to defeat this. When I was first diagnosed I was young as well.. and my mom ofc handled all the paper work and such. My chiari symptoms have completely debilitated me.. I can barely make it long enough to stand to brush my teeth. It pisses me off. Im in the ER every three weeks.. and they load me on morphine, torydol, benedryl, and ativan.. then tell me i need to find a ride home after a couple hours. they just dope me up and kick me out the door. but im making slow process in getting my MRIs and NS info together so i can move forward. anyway... feel free to add me!! and I really hope you know your not alone out here. We need to stick together!