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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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    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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    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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    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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    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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    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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    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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    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 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 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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    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 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 2 days ago

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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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    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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    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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    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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    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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    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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    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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    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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    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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    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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    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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    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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    Related Experiences

    So today is such a ****** day for me. I am in so much pain my head feels like its in a vice!!!! My butt cheek is killing me from the sciatic nerve that is being pinched from the...
    johnnystar4u johnnystar4u 41-45, M Dec 5

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    I'm a survivor in more then one way. I'm a survivor in the way aim the survivor from my cousins suicide. I'm also a survivor of my ow suicide attempt. It's been 8 months since I...
    leaguegirl97 leaguegirl97 16-17, F Nov 26

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    I guess I can't quite say that I'm a survivor of emotional abuse since I am still in the relationship. By the time I knew what emotional abuse was or that it even existed I already...
    LOMD LOMD 31-35, M 3 Responses Nov 22

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    Stroke Survivor Success Storyhttp://stroke-survivor-success-story.blogspot.com
    YeshTikveh YeshTikveh 61-65, M Dec 11

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    If you were to see me walking down the street, or in the grocery store, you would never realize that I am a survivor. The physical scars have healed, yet the mental and emotional...
    nuwbnprincess nuwbnprincess 31-35, F 1 Response 4 days ago

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    My cousin molested me since i was to young to remember. I started to realize it was wrong around the ages of 7-8. He slept over all the time practically lived with me. I started to...
    Prettygurl234 Prettygurl234 16-17, F 10 Responses Nov 22

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    I am a survivor of rape. I will not specify at what age, how many people, or who did it. However, I am here to say I have recovered and am living my life the way I should be. I...
    soyacarton soyacarton 18-21, F 3 Responses Nov 25

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    I am a survivor. 3 months ago, my boyfriend of 5 years hung himself from a tree in our backyard while I sat on the couch. he had severe depression, and had been saying he was going...
    hollygee hollygee 41-45, F 3 Responses Dec 11

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    I have a soul of emotional abuse survivor. I dont know why they all hurt my soul, my spirit and my mind. Thruh the years first it was my mother, then classmates disliked me, i...
    angel8i angel8i 31-35 1 Response 2 days ago

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    My daughter has BCS. She's 6yrs old now. She was diagnosed when she was 18 months old. Her body was shunting itself when I was pregnant with her. She's currently on Coumadin. She...
    annagracesmom annagracesmom 41-45, F Nov 30

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    Today is am abuser's birthday. This could possibly be the worst day of the year. Even after all he did to me, he still gets so much support and love from friends and family. I hate...
    jackjack600 jackjack600 18-21, F 4 Responses Nov 20

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    When I was younger I was molested by my brother in law. My mother and sister know but they don't believe it. Every time I look at his face I get sick. We talked about what happend...
    babykaykez19 babykaykez19 18-21, F 4 Responses Nov 20

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    just kids experimenting or abuse?? boy 2.5 years older than sister engages her is sex play on landing while dad at pub and mum watching tv. too young to penetrate her. multuple...
    Movingon45 Movingon45 41-45, F 2 Responses Nov 20

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    Three months ago I was diagnosed with cancer. The phone call came early that morning as the doctor informed me the test results showed a tumor. I remember my heart sinking low as...
    vincentriver09 vincentriver09 31-35, M 4 Responses Nov 20

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    I had a difficult time accepting that I had been abused as a child. Part of the reason for that is because growing up in that environment one tends to normalize what happened...
    scarecrow71 scarecrow71 41-45, M 1 Response Nov 20

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    I just wanna forget. I know it wasn't my fault...Sometimes the flash backs make me cry. Sometimes angry. My father is dead to me.
    roxrockman roxrockman 26-30, F 4 Responses Nov 21

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    Starving all the time was nothing new to me growing up. Other kids in school were the same way. My late father, used the money (Child tax benefit) to gamble, drink and feed himself...
    roxrockman roxrockman 26-30, F 1 Response Nov 21

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    It was a Saturday in April my junior year of high school. We had to come to school to take the ACT. Then my friend N and I were going to go over to my boyfriend T's house and hang...
    Jeradactyl Jeradactyl 22-25, F 3 Responses Nov 22

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    Tomorrow I start an intense 8 week program at a local hospital. The program is for adult women who survived childhood trauma and abuse. I was sexually abused when I was 6 - 9 years...
    Etheros Etheros 46-50, F 5 Responses Nov 23

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    http://www.byui.edu/counseling-center/self-help/abusive-relationships
    amtired amtired 22-25 Nov 25

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    6 weeks on and this is how I am feeling now! And I am surviving and coming back stronger. I must be honest and say that it still hurts, like any wounds but it’s turned from...
    LindaMabelle LindaMabelle 36-40, F Nov 25

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    I was abused from the ages of 4-6. Pretty much everything under the sun, including child *********** and child grooming. Rape, etc.
    Punchinginadream Punchinginadream 18-21, F 2 Responses Nov 26

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