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I Am a Chiari Malformation Survivor

Personal Stories, Advice, and Support 73 People

    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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    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 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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    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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    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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    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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    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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    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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    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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    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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    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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    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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    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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    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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    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 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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    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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    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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    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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    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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    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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    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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    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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    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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    Related Experiences

    I'm a 53 year old female I had chiari malformation surgery on July 11th 2014. I'm still recovering my head is numb and the tips of my fingers on my right hand is numb. I get tired...
    sj112760 sj112760 51-55 Aug 8

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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 8 hrs ago

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    I was a sophomore in college and he was a senior. Something about him being older made it feel so right…he was charming, mature, and the life of the party type of guy. Not to...
    EmmaCollins EmmaCollins 18-21, F 4 Responses Jul 31

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    When I was 15 I was sent to a treatment center for teens. It was I Maine, a place called Ironwood I was there for many reasons. First I had been raped the year before. It was very...
    jujubee16 jujubee16 16-17, F 2 Responses Aug 2

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    So I'm 13 and this guy I was with at the time was 18 I wasn't dating him just hanging out and I wasn't high or anything but we were chilling and he asked me a lot if times before...
    ryry009 ryry009 13-15, F 2 Responses Aug 5

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    It has been a while since I have posted here. I've restarted the videos on Survivors of Child Abuse and Maladaptive daydreaming. My latest video is about flashbacks and tips on how...
    Ishtaria Ishtaria 41-45, F Aug 7

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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 4 days ago

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    I was sleeping, out cold. My mum came in my room to attend to my little brother and let the dog in with her. My dog started to lick my hand and I heard rustling from my mum. I...
    jackjack600 jackjack600 18-21, F 1 Response Jul 30

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    'Come to my bedroom' he said, 'I just need to talk to you' he said. Them words I will never forget. But he didn't. He pushed me down on his bed and pinned me, forcing me to do...
    BethHawkins BethHawkins 13-15, F 2 Responses Jul 30

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    It shouldn't hurt to be a child. No child should feel like they are alone in the world, and nothing that they can do is right, but so many do, and the ones who do, feel like they...
    LostAriel LostAriel 22-25, F 2 Responses Jul 31

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    Again -_-. I was so angry yesterday that I just took.as many pills I could get my hands on and drank all of them, now I'm in a stupid hospital. I should actually get a gun to be...
    Xcinderella Xcinderella 16-17, F 3 Responses Aug 1

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    When I was about four years old I was diagnosed with a rare form of thyroid cancer. Along with this I also had a stroke, who knows how many radiation treatments and about a dozen...
    theartist102 theartist102 22-25, M Aug 1

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    My abuse was that of neglect and emotional abuse. There was some physical abuse but not enough to be scared from it. I was bullied all through school. I was even bullied in my...
    lonesojourner lonesojourner 46-50, M 1 Response Aug 1

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    My mom and my twin sister were all I had growing up. No family at all to visit, that is because they all HATED my moms husband. I never told people he was my step dad. He made all...
    Jml2013 Jml2013 18-21, F 2 Responses Aug 1

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    I was abused by the ONE person you'd never expect to do it. MY MOTHER. I was 12 when it happened & I'm 20 now. It still haunts me. I've forgiven her but yet I miss her so much at...
    ForeverYoung09 ForeverYoung09 18-21, F 8 Responses Aug 1

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    Corey was someone I met offline talked to for four months a United States marine cute and had a great vibe. A couple weeks after my boyfriend passed he came down took me out to...
    ChandlerTitus1 ChandlerTitus1 18-21, F 3 Responses Aug 2

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    2 years ago I was in a horrific motor bike accident. With my best friend and her step brother. I only remember what I was told about it. But we hit one an another. Leaving is all...
    sbj1234 sbj1234 16-17, F 1 Response Aug 2

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    I was a child slave from six to ten then was abused from ten to twelve and last year they attempted to make me a slave again but God was with me the entire time and rescued me when...
    gardengirl17 gardengirl17 22-25, F 1 Response Aug 2

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    Not many people know, because I try not to put my past out there, but I've tried committing suicide a couple times. I'm major depressive with suicidal tendencies. My family has...
    brandijade92 brandijade92 18-21, F 1 Response Aug 3

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    Careful guys, suicide is punishable by death in some states... You'll get the electric chair...
    DreadlockJesus DreadlockJesus 31-35, M 1 Response Aug 3

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    I remember being 6 years old and my older siblings had left home. My mother had jus had the youngest in our family. The twins were almost 3. My mother was a very sick alcoholic...
    squirllykid squirllykid 46-50, F 3 Responses Aug 4

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    Anyone know the cure for loneliness?
    itsawish itsawish 22-25, F 9 Responses Aug 5

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    I need a co-writer for a realistic drama novel about a woman in prison. Please help me.
    Blipsycat Blipsycat 16-17, M 2 Responses Aug 6

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