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I Am a Chiari Malformation Survivor

Personal Stories, Advice, and Support 66 People

    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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    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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    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 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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    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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    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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    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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    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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    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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    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 2 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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    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...
    Jan 23, 2013

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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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    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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    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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    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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    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 Nov 6, 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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    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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    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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    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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    Related Experiences

    My names Alaina, I'm 17, and about three years ago I was diagnosed with Chiari Malformation Type 1. So freshman year of high school I started having really bad headaches, and found...
    burtala burtala 16-17, F Mar 27

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    I'm here trying to spread awareness about chiari. Because it is serious and not many people/doctors know about it. It effects 1 in every 1000 people. Including me. It is caused...
    Mayleehawkeye Mayleehawkeye 18-21, F Mar 28

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    Thought this was funny and had to share!
    Mayleehawkeye Mayleehawkeye 18-21, F Apr 2

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    I am a survivor and will continue to be so. Robbed of my peace of mind and treated like crap, I lived through it. I can live through almost anything now. I would rather it had not...
    Thatredheadchick Thatredheadchick 46-50, F 2 Responses Apr 7

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    Stage 4 melanoma survivor :)
    Ilovemykids77 Ilovemykids77 36-40, F 3 Responses Mar 20

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    I have deep hatred for the MAN abused me sexually when I was just a little kid. I was only 4-5 years old when this guy, this so called relatives sexually abused me. I din't know...
    nobodyn234 nobodyn234 26-30, M 3 Responses Mar 25

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    If by 'survivor' you mean that I'm alive and now an adult. It's a betrayal. The one person who is supposed to do everything but hurt you, inflicting harsh, ongoing, wanton pain...
    HumanKnownAsVictor HumanKnownAsVictor 18-21, M 8 Responses Apr 4

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    I was 26 years old when I got GBS. I was a new mom of a four month old baby girl. Before she was born I had taught 1st grade. The plan was to take a year off from teaching then go...
    mommabrick5 mommabrick5 46-50, F 1 Response Apr 7

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    Can kids or adult survivors of child abuse sue thier parents? The answer is complicated. The short answer is no. http://whatprivilege.com/abused-kids-cant-really-sue-their...
    Ishtaria Ishtaria 41-45, F 2 Responses Apr 11

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    Among them family who were in concentration camps, mostly Treblinka, but I know at least a few went to Dachau and Stutthof. I have seen only Treblinka and Dachau. Also, various...
    seitanist seitanist 22-25, F 3 days ago

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    Part III i look at my past GBS stories... although brutally honest... which i tend to reserve for justme... so grateful to report the love of a few close, dear friends... of family...
    clgsassy clgsassy 56-60, F 1 Response Mar 19

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    I still love you dad, for some reason.
    shannonigin shannonigin 22-25, F 3 Responses Mar 19

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    My mom was going to abort me when I was 8 months in the womb. But the doctor told her it was too late. And now she still wants to abort me. :(
    KaitlynUchiha KaitlynUchiha 22-25, F 1 Response Mar 20

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    When I was 12 years old I tried to kill myself three times and almost died 2 out of the three times. When I was 13 I tried to kill myself multiple times and loss count. I am now 14...
    allytoledo allytoledo 13-15, F 2 Responses Mar 21

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    My story I keep asking myself when it all started. If there was a specific day or a specific event to be able to pinpoint when I started to loose myself. There is no day or...
    NoDavid NoDavid 46-50 1 Response Mar 22

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    My step father beat me and my sisters and brother regularly as a parenting technique. I've held onto these horrific memories most of my life and it's affected my parenting...
    lonelyCPA lonelyCPA 36-40, F 4 Responses Mar 22

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    I was with "him" for almost 30 years. In the beginning I did notice that he was somewhat controlling. Also he could be manipulative. However in those times these actions were...
    Freedom425 Freedom425 46-50, F 1 Response Mar 23

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    Hey I need help. it's URGENT! My doctor was concerned in the past because my last blood test my thyroid was on the line. Not bad not good but she was worried it was getting worse...
    shybutkindd shybutkindd 13-15, F 1 Response Mar 23

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    It started when my mom married my stepfather. He would use any mistake I made as an excuse to punish me. The punishment was always sadistic compared to the silly mistakes a 4 year...
    Zacarabear Zacarabear 18-21, F 2 Responses Mar 24

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    I think that most of the things I allow sexually had to do with me being sexually abuse when I was younger I need professional help
    Reynastaxx Reynastaxx 26-30, F 3 Responses Mar 24

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    I was 15. I trusted someone I should not have and will have to live with the consequences forever. I was raped and became pregnant, but only found out when I miscarried after a...
    Astro314159 Astro314159 18-21, F 1 Response Mar 25

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    My story is not as bad as some of the others I have read. I was bullied through the ages of 6-12. For the most ridiculous reasons too. First: I have a big nose. : ) I'm sure you...
    hellcat88 hellcat88 41-45, F 2 Responses Mar 25

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    THE JOURNEY THROUGH THE LAND OF THE “UNIMAGINABLE STARTING OVER” If someone would have told me that I was going to lose my children a year ago I would have laughed. If...
    NoDavid NoDavid 46-50 Mar 26

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    Abandoned as a toddler, foster care, abuse of ALL kinds, growing learning, finding God, and true love, getting stronger all the time....life is now good.
    MaryB7 MaryB7 51-55, F Mar 26

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    Okay this very rare virus I contacted just over 26 years ago. Now I still can't get up from the ground in the sitting position without help. Do more exercise to strengthen your...
    JohnCrighton JohnCrighton 51-55, M 2 Responses Mar 27

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    I was raped several times by my stepmom's bf. But it was a bleassing in disguise of sorts. I don't like what happened to me, but it did get me out of that house and I was adopted...
    sadsarahg sadsarahg 18-21, F Mar 27

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    Really long story, short, I took over 120 prescription pills, the kind that would guarantee this sickening, lonely, heartbreaking slide down into the black pit of depression would...
    ravgirl007 ravgirl007 56-60, F 2 Responses Mar 27

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