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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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    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 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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    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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    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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    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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    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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    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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    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 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 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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    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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    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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    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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    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 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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    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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    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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    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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    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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    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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    Related Experiences

    In January 2010 I started getting crazy fatigue and head aches around 12pm every day. I cut back on hours continuously until it got so bad, I was getting sick before I even got out...
    harmony090987 harmony090987 26-30, F Jun 22

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    Well, I've always had headache and back issues. We just kind of assumed it was genetic or something. Finally, about 4 months ago, my headaches became unbearable along with my back...
    jfernau jfernau 18-21, F 2 days ago

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    I have chiari. I had surgery when I was 16 but the symptoms are coming back.... I might be the only one on this group or whatever idk. If I'm not let's talk about experiences.
    Njhc856 Njhc856 22-25, M 1 Response Jul 6

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    Dont you think its strange as survivor to trust people after being abused? I know one naive woman who was abused all her life (i know her from videos) and she still has hope and...
    angel8i angel8i 31-35, F 1 Response Jun 26

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    Second year of college (five years ago now) I was diagnosed with cancer. As cancer's go, mine was pretty safe. I was given a 95% survival chance, and my chemo treatments had only...
    Franklee206 Franklee206 22-25, M 2 Responses Jun 23

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    I was abandoned and neglected. I was physically, emotionally and sexually abused throughout my whole childhood from ages 0-17. I was in Foster care and lived in 5 different house...
    katcard katcard 18-21, F 5 Responses Jun 28

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    I have survived many types of abuse through life physical, sexual, mental and emotional.... I believe these things have made me who I am today.. And I am truly stronger for it... I...
    mssst mssst 36-40, F 1 Response Jul 8

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    My mom had an abortion when I was 8 or 9. She told me how I was going to have a sister and then she got rid of it. It took me years until it finally hit me and I had survivors...
    dbuckley96 dbuckley96 18-21, M Jul 13

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    June 2002 - my cousin, who I grew up with and was close to, was suddenly shot one time in the chest at 4 AM... He was 26 and it was labeled suicide... He had spoke to his aunt that...
    DarkwingGoslyn DarkwingGoslyn 31-35 1 Response Jul 14

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    Starting at the 7th grade and lasting until the late 9th grade yearly 10th grade I suffered with depression and several suicide attempts. I thought I was alone..because you know...
    MacKenzie31113 MacKenzie31113 16-17, F 1 Response Jul 14

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    Or am i. Explored knives twice. Watched beetlejuice inbetween. Aborted both times. Why. Why. Hope maybe. Maybe. But society got worse. So why still hope...
    converted converted 46-50, M Jul 14

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    At the age of 4 my mother abandon my sibblings and I , my father did the best he could . He worked and he was an alcoholic . At the age of 4 I was sexually assaulted by to...
    sara75 sara75 56-60, F 1 Response 6 days ago

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    I was diagnosed with leukemia when I was five. A month later the doctors said I was in remission. I went through two more years of chemo and radiation. Now I am 9 years in...
    Wallflower5906 Wallflower5906 13-15, F 5 Responses Jun 22

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    5 years ago I attempted to take my life...I had enough of the bullying and the words and lost people on my life...then an elderly lady came to me and convinced me to not go through...
    FriendlyCanadian321 FriendlyCanadian321 18-21, F 4 Responses Jun 23

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    Last week. I overdosed, and slit my wrists....you know, when I did it, I didn't even feel the pain...maybe that's because I had felt so much pain already, I don't know. Maybe...
    Betruetoyourselfxx Betruetoyourselfxx 13-15, F 1 Response Jun 23

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    1 more day tell I learned if I ****** up my body for life from my last attempt, pretty sure I have
    eatthekids1stplease eatthekids1stplease 18-21, M 1 Response Jun 23

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    I was born with a brain cancer called medualloblatoma . At around three old I had the cancer removed followed by chemotherapy . Later the cancer came back . The doctors did full...
    ballboy24 ballboy24 18-21, M Jun 24

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    I have been through a lot, yet I smile a lot just so I don't make others worry.
    Pettraner Pettraner 13-15, F 1 Response Jun 25

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    42 years ago in 1971 I had a NDE due to an accident. I know we all have heard stories about what it was like, going through the light, seeing our bodies as we left. Taking a...
    LoveWillKeepUsTogether LoveWillKeepUsTogether 56-60 Jun 26

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    Still trying to survive despite more illness. I have conquered before and can do it again. It took a friend to realize again that even though my strength is waning like the moon it...
    CandleDancer39 CandleDancer39 36-40, F 2 Responses Jun 27

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    A singer pointed it out. Viet nam was bad. But so are local events. Events carry us through emotions. Society gave them all brownie points. Nam was legal. As is...
    converted converted 46-50, M 1 Response Jun 27

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    When I was 5 and then 7 I was raped by to different men I knew. It hurts me still. Sometimes I wake up thinking about it and cry randomly. I have so much built up anger and sadness...
    phoeb3778 phoeb3778 16-17, F 1 Response Jun 27

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    3 times now. skin, thyroid, and esophageal + 2 different other cancerous cysts on vocal chords discovered upon thyroid removal!!!!!!
    hotstuff08755 hotstuff08755 46-50, M 1 Response Jun 27

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