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I Am a Chiari Malformation Survivor

Personal Stories, Advice, and Support 73 People

    I Have A Type I Chiari And I Refuse To Give Up Hope

    Hii, my name is Taylor and I was diagnosed with a type I chiari and a tethered spinal cord in October of 2012. All my life I have had trouble with my balance, my bowels, my bladder, swallowing, my vision, losing feeling to my hands and feet, fatigue, vertigo, complete loss of...
    taylorshimp taylorshimp 18-21 3 Responses Jan 16, 2013

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    Tired Of Not Feeling Well And Scared

    I was diagnosed with CM1 in march 2011..I didn't have any symptoms at first..just the occasional headache here and there. I had just had a baby 8 months prior and was enjoying life. In november of 2011..I stood up and stretched and when I did I heard something pop and I had a...
    desmal77 desmal77 31-35 1 Response Feb 21, 2012

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    My Story

    My name is Kori and i first found out that i have Chiari Malformation when i was in 9th grade. But before i found out i started having really debilitating headaches that made one side of my body go numb, uncontrolable eye movements from side to side. I also started throwin up all...
    KoriAdairSmith KoriAdairSmith 18-21 Oct 27, 2010

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    My Story

    In October 2009 I started  getting really bad headaches, at first I just thought it was from field hockey but as the days and weeks went on the headaches started getting worse and worse sometimes I would just fall to my knees it would hurt so bad.  After about a month...
    heleneeee heleneeee 13-15, F 1 Response Apr 25, 2010

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    My Chiari Story:)

    I had been sick for a very long time:( Until Dr. Barnes found my Chiari:) I found out June of 2009 that I had Chiari Malformation:( With in two weeks I was having the decompression surgery. I was told that I was at 23mm. I had began chocking during the night. My headaches were so...
    mrsallanwstill mrsallanwstill 41-45, F 4 Responses Jul 16, 2010

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    My Story.

    My name is Kara. I am 16 years old and I survived Chiari. I have been faced with drop-to-your-knees-screeming headaches all of my life. Ever since I was little I have been scared to laugh. Everytime I would do so, I would get in instint pain in the back of my neck. It wasn't...
    KaraLeigh KaraLeigh 16-17, F 2 Responses Apr 22, 2012

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    Chiari Malformation And Syringomyelia Help

    I was just diagnosed on 1/18/2013 with chiari and syringomyelia. I have a lot of common symptoms. I have since childhood but always was told it was in my head. im in the process of seeing a chiari specialist but untill then i have a few questions i was hoping some one might be...
    1 Response Jan 23, 2013

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    No Where to Turn

    I was recently diagnosised with Chiari Malformation on June 4th, 2009.  I was told I needed the decompression surgery immediately as my symptoms were posibily showing some nerve damage.  So I had the surgery on July 2, 2009. I was so scared and asked so many...
    RayOfHope09 RayOfHope09 31-35, F 6 Responses Aug 31, 2009

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    Please Help! Is This Normal??

      Hi there,   I have just had the operation done, I live in Sa  and I’m 24 years old. I was told that the Chiari type I have is most common in babies and that it was type 2. How it started out was I and had really bad headaches all my life, they started...
    reggier reggier 22-25 3 Responses Aug 3, 2009

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    Charity's Chiari Story

    I am a 34 mother of 3 and my most recent dignoses as of March 2009 is a Chiari Malformation. ( I was diagnoses in 2002 with syringomyelia c5-L1 it has now extended to my c3, and in 2007 with basilar invagination, they are currently questioning wether I have a tethered cord as...
    sweetcharity74 sweetcharity74 31-35 1 Response May 21, 2009

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    Life: An Uphill Battle.

    My heart goes out to everyone living in pain. i've been facing uncontrolable pain for almost seven years and every day it just gets worse. i had a decompression surgery for my type I chiari 13months ago, two months into my senior year of high school. it helped with some of my...
    krissykhaos krissykhaos 18-21, F 2 Responses Nov 4, 2012

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    Beating Chiari Malformation

    I had this life changing experience 3 years ago ago when I was diagnosed with a Chari Malformation, a malformation of the brain's cerebellar, which hindered my cerebrospinal fluid flow. I was pulled out of volleyball and had to undergo surgery. I knew that I was going to endure...
    jessicammart jessicammart 18-21, F Sep 7, 2013

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    Two Years Post Op

    For as long as I can remember, I've had headaches and "dizziness".  I do recall going to the doctor when I was about 9 or 10 and being told to write on a calendar each time I had a headache.  Other than that, I guess I just thought that the headaches and dizziness...
    tcessna tcessna 41-45, F 1 Response Feb 11, 2010

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    My Mom Has Chiari

    I know the name of this group, but I feel the need to share my experiance with my mom having chiari malformation. Now this might be a little long, but this did last a few years.This was during my 7th grade year the day she got diagnosed. It was a Friday (May 16th, 2008) and I...
    Ghost218 Ghost218 18-21, F 2 Responses Nov 9, 2011

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    Just A Quick

    It's really not my story, it's my son. He's 2 years old and has a type 3 CM. Not alot is know about his type...everywhere i look, I'm lucky if I can find a paragraph about it. I either get that it's not compatiable with life or life expectancy is extremely short...I'm looking for...
    joshlovesjamie joshlovesjamie 31-35 1 Response Feb 4, 2011

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    12 And Diagnosed....

    Hi I'm Natalie, and I was diagnosed with chiari malformation.i used to bein gymnastics but I always had to get picked up cause I would always throw up and get massive headaches. My mom said it was my fault and that I was wasting her money , and I know that gymnastic is a lot of...
    Ncc98 Ncc98 13-15 2 Responses Apr 25, 2012

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    Having A Bad Day

    Daaaammmmm it was just talking with the flatmates about bungy jumpping and sky diving and all of these fun things i cant do...GGGRRRRRRR Far out i hate chiar malformation... Im post decompression, just over a year and take pain killers most days. What is the long term effects...
    jon224 jon224 22-25, M 1 Response Jun 17, 2012

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    Chiari Malformation Sufferers Needed For Newspaper Story

    Hi there, I'm a features writer for the national newspapers and women's magazines in the UK. I'm looking to do a story with someone who suffers from Chiari Malformation to raise awareness of the condition and how it affects the individual. It would be sensitively written and a...
    FayeCaters FayeCaters 22-25 1 Response Nov 6, 2013

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    Chiari Malformation Support Group

    I was diagnosed with Chiari Malformation in 2006. I was 42 and I had noticed some changes in my body that scared me. My coordination was off, I would get dizzy and lose my balance, I would have pain and the feeling of almost paasing out when I coughed, I could not...
    betterhalf65 betterhalf65 41-45 3 Responses Nov 5, 2008

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    Chiari Survivor

    I guess my story is very different from most people. I had headaches since I was a kid, exertional headaches that would drop me to my knees. I enlisted in the Marine Corps at seventeen and by 18-19 I had severe right shoulder pain that would come and go, mostly after raising my...
    Mikenstein Mikenstein 36-40, M 4 Responses Apr 17, 2009

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    I was first diagnosed with chiari at a very

    young age. my sister, brother and I was the first family to all three have it. it was first discovered by my sister going to the eye doctor and they noticed something abnormal, so sent her to a specialist and did a MRI and come to find out she was diagnosed with chiari, so as a...
    jennysimmons jennysimmons 22-25, F 1 Response Feb 23

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    Chiari Malformation And Syringomyelia Help

    I was just diagnosed on 1/18/2013 with chiari and syringomyelia. I have a lot of common symptoms. I have since childhood but always was told it was in my head. im in the process of seeing a chiari specialist but untill then i have a few questions i was hoping some one might be...
    1 Response Jan 23, 2013

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    Symptoms Coming Back And Really Nervous!

    Hello everyone! Brand new to this group! I was originally diagnosed with Chiari Malformation type 1 w/ syringomyelia in May 2006. I went for 2 years seeing Neuro who just let me suffer through the pain. Finally after having enough and weakness in my extremities getting worse i...
    blueraejay blueraejay 26-30 2 Responses Apr 11, 2011

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    New and Scared

    Hi my name is Antoinette and I am very new at this and quite scared about all that has happened so fast. February 9, 2009 changed my life forever, as this was the day I was diagnosed with chiarimalformation with a syrinx.  I was seeing an orthopedic specialist for...
    colorpurpleilove colorpurpleilove 46-50, F 5 Responses Apr 20, 2009

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    Chiari Will Live With Me All My Life, Painful As It Is, But It Will Not Beat Me. For My Facebook Page

    I'm a 42 years old Hispanic Woman and was a career orientated working woman for 14 years serving the community in the social services and job placements. Furthermore, I was a part-time college student practically those 14 years to earned a bachelor degree. I'm also a mother of a...
    Losiram Losiram 41-45, F 1 Response Mar 21, 2013

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    Chiari Will Be With Me All My Life, Painful As It Is, But It Will Not Beat Me!

    I'm a 42 years old Hispanic Woman and was a career orientated working woman for 14 years serving the community in the social services and job placements. Furthermore, I was a part-time college student practically those 14 years to earned a bachelor degree. I'm also a mother of a...
    Losiram Losiram 41-45, F Mar 16, 2013

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    How I Stay Strong With Chiari Malformation

    Hello, I'm Mari and I'm a 42 years old Hispanic women living with CM. How I found out about my disorder. I guess I always known. I just couldn't identify it and I think I had a high tolerance for pain. I remember as a child my mother taking me to the emergency room for many ear...
    Losiram Losiram 41-45, F Mar 16, 2013

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    Related Experiences

    I lost 2 members of my family while we r struggling to get out of our burning house , it was horrible .. It hurts that they didn't make it .. It's true we took them out of the...
    farnoush farnoush 26-30, F 1 Response 13 hrs ago

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    Victim"...I hate that word. We are not "victims". We are some of the strongest, bravest women to walk the earth. We are survivors.  We are not stray helpless animals, we are the...
    TriciaFL TriciaFL 36-40, F 1 Response Aug 29

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    I went back around the same time it's brought the side back the awful angry nasty side why for what? That place holds what scares me the most my nightmare It holds what should of...
    cailowe cailowe 16-17, F 1 Response Aug 25

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    2 years ago I was raped by a stranger while backpacking in Europe--I was alone at the time because I was en route to meet up my cousin that night. After a terrible night of doctors...
    imasurvivor411 imasurvivor411 22-25, F 4 Responses Aug 31

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    If anyone out there is survivor or going through domestic abuse and would like to talk or be listened to by some one who understands. Looking for understanding people who have had...
    tazygirl tazygirl 18-21, F 1 Response Aug 31

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    If you are reading this message, you too are a survivor. If you are not reading it, then you may or may not be dead.
    adianoeta adianoeta 26-30, F 2 Responses 6 days ago

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    I am a survivor of rape. I was a victim of an ex-boyfriend and he raped me in January of 2014. I need some support and all of that to get through this. It would be nice if someone...
    momoshep142 momoshep142 18-21, F 1 Response 3 days ago

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    My supervisor was a ****. I was part-time at a busy retail store based near my college. I was doing minimal hours - occasionally 16 hours a week. The pay was poor, but it got me...
    xSundip xSundip 18-21, M 10 hrs ago

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    i think it's odd what we don't know about cancer until it knocks on our door. i was lucky when i finally got around to going to a dentist and they took the time to look at more...
    trailsonrails trailsonrails 51-55, M 4 hrs ago

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    I wanted to believe that it would make all the texts telling me "to kill myself" go away. I was so close. I had the knife right up against my neck. I felt the sharp tip up against...
    abbyhh25 abbyhh25 16-17, F 3 Responses Aug 16

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    Most people know how Pompeii was destroyed by clouds of toxic gas and hot volcanic ash in 79AD, but not as many know it was severely damaged by an earthquake in 62AD caused by the...
    BeautifulAddiction49 BeautifulAddiction49 46-50, F 1 Response Aug 16

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    Me wants to be. Former pals say i am. They say hey you are sober and 47. Guess i am.
    Livyn4pals Livyn4pals 46-50, M Aug 16

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    I was sexually abused by my step father from age 6 to age 17 :(
    timjsmiles0016 timjsmiles0016 18-21, M 2 Responses Aug 17

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    I feel like I'm not even alive like no one wants me here like I'm alone like I shouldn't be here....but I still am and that sucks
    Moonlightwolf6 Moonlightwolf6 13-15, F Aug 17

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    School started today and I'm scared i'll get bullied this year again...
    Naginion Naginion 13-15, F 1 Response Aug 19

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    The first time I attempted suicide was at 10, my ***** doner turns out had like 5 other familys and women on the side, and beating me and my mom. I broke a Christmas ball ornament...
    UnstableSammi UnstableSammi 22-25, F 2 Responses Aug 20

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    When my single mother couldn't make ends meet, I would pay for it in anguish. There was nothing scarier to me than the end of the month. I felt as though 'something wicked this way...
    cleartext cleartext 41-45, M 1 Response Aug 20

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    I have been raped 3 times by different guys. One was my dad when I was 3, then the other two were ***** guys. I didn't even know them. They drugged me and had their way. Only 3...
    UnstableSammi UnstableSammi 22-25, F 3 Responses Aug 20

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    No matter how much it pours - I will dance in that rain , at the end of the day , it's up to me to live to fight for another , for I believe , I can and will , I try , become...
    stephenrko stephenrko 31-35, M Aug 20

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    Two weeks ago I OD on my meds, not a very high dose, I hadn't been taking my meds for sometime and should have began at a low dose, but began at 600mg plus my other meds which lead...
    Lily449 Lily449 18-21, F 3 Responses Aug 21

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    Thankful I got out. If anyone has or had a similar experience you can message me. We can share our stories about how we got safe.
    Shermer Shermer 36-40, F Aug 22

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    I have always felt alone and i have never been able to share my story for many reasons ...the main one being severe trust issues... I hope that in time i will be able to share bits...
    cheekygirl21 cheekygirl21 31-35, F 1 Response Aug 22

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    I am 33. I met a woman online and we talked as friends for 3 or 4 years without ever meeting. Even though she lived only 30 miles from me. She had been diagnosed with "bipolar" and...
    bentsurvivor bentsurvivor 31-35, M Aug 22

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