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I Am a Chiari Malformation Survivor

Personal Stories, Advice, and Support 77 People

    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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    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, 2014

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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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    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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    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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    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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    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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    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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    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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    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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    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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    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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    I was diagnosed to have ACM last July 2011.

    Immediately surgery was done (July 19,2011) due to severe symptoms like lose of balance,ringing in the ear,slurred speech,double vision etc. In 3 years I feel very much healthy except that I still use my cane. But now the same symptoms are recurring again.I had my EMG last month...
    lydzcuevas lydzcuevas 61-65, F Dec 17, 2014

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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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    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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    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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    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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    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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    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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    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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    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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    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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    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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    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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    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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    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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    Related Experiences

    Also looking for information from those who have it, because personal experience is best for getting all of the true facts.
    littlegrayfeather littlegrayfeather 36-40, F 1 Response Jan 8

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    I am not a recent survivor. I left my husband a little over three years ago. In some ways I am coping much better than three years ago. In other ways I am not. The euphoria of...
    strongerwiser34 strongerwiser34 31-35, F 2 Responses Dec 30, 2014

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    I am not a recent survivor. I left my husband a little over three years ago. In some ways I am coping much better than three years ago. In other ways I am not. The euphoria of...
    strongerwiser34 strongerwiser34 31-35, F 1 Response Dec 30, 2014

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    I am not a recent survivor. I left my husband a little over three years ago. In some ways I am coping much better than three years ago. In other ways I am not. The euphoria of...
    strongerwiser34 strongerwiser34 31-35, F Dec 30, 2014

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    I am not a recent survivor. I left my husband a little over three years ago. In some ways I am coping much better than three years ago. In other ways I am not. The euphoria of...
    strongerwiser34 strongerwiser34 31-35, F Dec 30, 2014

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    Yes i am a very proud survivor of rape because i have been rape by three different men in my life. One is my own step father that my mother choose to married without talking and...
    Kelbug Kelbug 26-30, F 7 Responses Jan 3

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    Just a heads up, don't watch the new episode of Criminal Minds. I thought I was fine until JJ confronts her demon and he tells her he will always be there in the back of her mind...
    irongirl135 irongirl135 18-21, F 1 Response Jan 15

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    This story is my own, I’m not telling it to get pity but cause it helps to talk about it and I know it can help others in the same situation or who have been there…. This is...
    ocecas ocecas 41-45, F 3 Responses Jan 16

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    Being a survivor is something I embrace in myself. I could ponder endlessly as to why I experienced the trauma... and believe me, I have. But honestly, I've fought hard to put it...
    WithGracefulness WithGracefulness 46-50, F 10 Responses 2 days ago

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    I didn't understand that what was happening wasn't normal. It was part of my daily life, being touched, being forced to do disgusting things to him. The first time I was raped, I...
    NotSoAngelic NotSoAngelic 18-21, F 2 Responses 1 day ago

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    Long story short, my mom had an ectopic pregnancy when she was pregnant with me. I survived; my twin didn't. Even before I knew I had a twin I was obsessed with the idea of...
    HorseGirl21 HorseGirl21 26-30, F Dec 29, 2014

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    Just writing that title fills me with trepidation! Does anyone else have difficulty just talking about what happened? It is very difficult to find the courage to talk about it...
    brokenat5 brokenat5 61-65, M 1 Response Dec 30, 2014

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    My high school had a high proportion of Jewish kids, who seemed to be just like the rest of us, except that they got extra holidays in honour of their religious festivals. Jeff...
    amberdextrous amberdextrous 51-55, M 1 Response Dec 30, 2014

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    It's been 25 years ago I left the man who abused me. It took a while to become strong but I built a good life raised my son the best I could and had a successful business. My son...
    Truthsetsmefree Truthsetsmefree 61-65 1 Response Jan 2

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    a Girl with 40 small brain tumors has touched my heart. I want to know how long she has to live she's 16 and I want to know how much life she will be able to experience. I don't...
    matrixwolf matrixwolf 16-17, M Jan 2

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    My step brother raped me as a child. I just finally told my dad about two years ago. My mom always knew and never did anything about it. My grandmother who is dead asked if I was...
    hellokittysr hellokittysr 22-25, F 2 Responses Jan 3

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    I never thought that it would happen to me but it did. I was raped (i was unconscious at the time) by one of the staff members at a hospital that i was staying at (he was arrested...
    Horse10202 Horse10202 18-21, F 5 Responses Jan 3

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    I still remember an elder person in ma neighborhood using me for sexual pleasure. He used to keep ma hands on his d**k and made me jerk it.. I guess I was 4 or so at that time. I...
    a090109 a090109 18-21, M Jan 4

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    Poverty, rape, discrimination, bullying, you name it. Whatever life throws at me, I'm ready. Everyone is fighting a battle you don't know about, so be kind.
    takoyakisuki takoyakisuki 22-25, F 1 Response Jan 4

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    It stops with me. Yes, I was abused. Still am, and I'm 65 years old. I was watching an episode of Law and Order SVU, and one of the characters said it poignantly said that she...
    casualwear casualwear 61-65, M 4 Responses Jan 4

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    I was drunk and I hate it. My friends left the room abandoning me and the only sober guy was in my friends room comforting her because she was drunk crying no one was comforting...
    Forgottenflower Forgottenflower 18-21 1 Response Jan 5

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    And I'm so glad I'm alive.
    NewBeginnings5 NewBeginnings5 22-25 Jan 5

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