I Had Arnold Chiari Malformation

Personal Stories, Advice, and Support 72 People

    Chiari Is A Long Journey

    Hi Everyone, I have had a very long difficult Journey with CM1. Briefly: I became ill in 2001. Four years and 52 Specialists later I was sent to an incredible Neurosurgeon & was diagnosed with Bi Lateral Geniculate Neuralgia. I had MVD surgery on 12/4/2004. At my Post Op...
    TracyZ0401 TracyZ0401
    41-45, F
    Dec 7, 2012

    My Daughter's Resent Diagnosis

    My daughter has just been diagnosed as having Chiari Type 1 malformation.   We are still in the learning stages and completing all studies before getting a treatment plan.  Any words of wisdom would be welcomed. Sherri Rice
    1drmom 1drmom
    5 Responses Mar 8, 2009

    I Do Not Have A Chiari Malformation, But I Am Starting A Non-profit For It!

    My Mission:It is my goal to help.I want to raise money for the research of rare diseases and disorders. It’s often said that “everyone is a photographer now”, and it’s true! Everywhere you look there is someone else saying how much they adore the art of photography and...
    ArtsiMom ArtsiMom
    22-25, F
    1 Response Nov 11, 2011

    I Was Just Diagnosed

    So a cpl of days ago i was told that i have arnold-chiari malformation......Im scared........I dont know what to expect or what is expected of me
    shamikab shamikab
    26-30, F
    Feb 29, 2012

    Is This Hereditary?

    My mum had the decompression surgery in 2006. She is in constant pain, the right side of her body never lets up. Her arms and back are always in agony. I try to help her to the best I can to make life more comfortable to her. After seeing what she went through, I am kind of...
    girlietorres girlietorres
    31-35, F
    3 Responses Apr 3, 2010

    Someone Please Help!

    I was so relieved to finally be diagnosed with something that answered all of my symptoms. Yesterday I was told by a neurologist that my chiari is not causing my symptoms of all over pain, muscle weakness, confusion, dizziness, tachycardia, tingling in my hands and feet, numbness...
    shydrangea shydrangea
    36-40, F
    5 Responses Dec 23, 2011


    This entry made for those browsing the internet for information on symptoms matching: headache, neck pain, back pain, dizziness, vertigo, fainting, weakness, nausea, vomiting, arm or hand tingling, short term memory loss, confusion, trouble swallowing, choking. I have Crohn's...
    rudyard rudyard
    6 Responses Mar 9, 2008

    Feeling Low

    i was diagnosed a few months ago,i had a car accident just under 4yrs ago .The first symptom i had had were a pain in my shoulder/upper back it seemed to get worst when i did long distance driving , i had various pain relief treatments but nothing worked it just kept getting...
    waynewilly waynewilly
    36-40, M
    1 Response Oct 30, 2009

    Went For Pre-op Today.

    I am a 22 year old female. Today I went for my second opinion about my chiari malformation type 1 and I receieved the same verdict as the other doctor gave me. Then I went to the hospital to get my pre-op done for my surgery schuduled next week may 19. Im scared and want to know...
    sraemarie36 sraemarie36
    3 Responses May 12, 2011

    Rough Day

    My head has pounded all day.  Phoned the Mayo Clinic again, they say my case has been assigned to a doctor there and they're checking my scans and all.  My wife picked me up from work, I was so releived to see her I broke down and cried.  So much for the manley man...
    Snoopy7904 Snoopy7904
    2 Responses Jun 16, 2009

    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 when the cerebellar tonsils hang too low and push out the base of the skull. And can cut off spinal fluid from flowing properly. It causes...
    Mayleehawkeye Mayleehawkeye
    22-25, F
    Mar 28, 2014

    I Have Chiari Malformation Type 1

    I'm 20 year's old and I have Chiari Malformation type 1. After my car accident 4 1/2 years ago, I started experiencing different symptom's. Almost 2 years ago was when I was diagnosed with Chiari Malformation. I went through 3 doctor's before they found it. I've experienced...
    dreamer87 dreamer87
    18-21, F
    Jan 3, 2008

    Ive Had Arnold Chiari Malformation Twice

    hello my name is emily i am 26 and i was originally diagnosed with a brain tumor when i was 10 in 1996 and that was taken out and then in 1998 i started having alot of headaches and nausea and vomiting and my voice got very horse and i started having alot of balance problems...
    gothope85 gothope85
    26-30, F
    1 Response Jun 5, 2012

    Acm Decompression In 2007, Now Having Similar Symptoms. Doc Says No Change In Mris.

    My name is Kellie and was diagnosed with Arnold Chiari Malformation in 2005 at age 27. I had symptoms since I was a teenager. I was diagnosed with "inner ear syndrome" for the ringing in my ears, clumsiness, and dizziness; migraines for the severe, crippling headaches with light...
    emeraldeyes1599 emeraldeyes1599
    31-35, F
    Jun 4, 2012

    One of Two People In My Family to Have It

    I am 25 years old and have been dealing with debilitating migraines since I was 15 after hitting the base of my skull on a counter upon standing. About two years ago they became so frequent that i was getting them every day (and still am). After having my billionth MRI of my life...
    Casehead Casehead
    2 Responses May 14, 2008

    Recently Diagnosed

    thought i'd have a look too see if anyone else has this...
    josiejosie josiejosie
    46-50, F
    2 Responses Aug 29, 2011

    New Chiari Diagnosis

    Just diagnosed last week, waiting to see a neurologist again this week. Last week my family doctor conferred with another neurologist who told him that "chiari does not cause slurred speech, stumbling, memory loss, or confusion. She has psychosomatic symptoms." Never seen me, did...
    shydrangea shydrangea
    36-40, F
    2 Responses Dec 19, 2011

    Arnold Chiari Malformation

        Im Nikki and I'm 18 years old. I found out I had this Malformation in Oct. of 2010. I went to the doctors about my shoulder because it always hurt and it was diffucult to move it. I went into have a MRI of my neck and shoulder and they found it. I had just...
    nfatka33 nfatka33
    3 Responses Dec 17, 2010


    This morning I woke up with yet another burning headache.  My nerosurgeon has still not called me about my most recent MRI.  I want to stay home.  I don't want to hear another person asking me "how are you doing".  My head hurts, my ears ring, my...
    Snoopy7904 Snoopy7904
    Jun 16, 2009

    Life Of Pain

    I have been living in pain since I was 13, however I only found out about my CM in 2010. My doctors won't really listen to me and I have a lot of anxiety. I am in pain everyday. I also have scoliosis, which in turn comes with muscle and joint pain. With no insurance I have no...
    Rdbastida Rdbastida
    31-35, F
    Jan 20, 2013

    Chiari And Bipolar

    My name is Chilo. I was dx with Chiari & Syringomyelia in 1994. I've had the surgeries, done the whole gammit of everything we can think of. I even went as far as to have two neuralstimulators implanted for pain mgt. About a yr ago I was dx with Bipolar. Now I"ve done quite a bit...
    chilowalters chilowalters
    Sep 25, 2012

    8 Years After Surgery

    After severe headaches, nosebleeds and feeling the back of my head at the neck swell I went to the doctor and was diagnosed with Arnold chiari Malformation.  When I first noticed pain I was about 16 but never paid much attention.  I did not have insurance either so I...
    sicjmo sicjmo
    10 Responses Apr 21, 2008

    Will I Get Better?

    and dont seem to have made much improvement since my initial operation.I now have a shunt to help with abnormal pressure.My surgeon has chosen not to drain my syrinx in the spine saying it will move itself.I have since lost more feelings down my arm and am losing sensation in my...
    banannas742 banannas742
    18-21, F
    2 Responses Nov 12, 2009

    Been There Done That

    I had another condition first caused by a stroke and while trying to stop that pain and other symptoms, I was blessed with an informed doctor who wanted me to endure yet another mri, so I said o.k. and sure enough there it was. Yes, I called the other doctors who had missed it...
    yowmom yowmom
    1 Response Jan 19, 2008

    Scared Of My Symptoms

    I was diagnosed with Chiari type one a little over a year ago. I guess I've had some of the symptoms my whole life but never realized what I was going through was abnormal. The horrible headaches that start at the base of my skull were something I had since I was little. Then at...
    jc83 jc83
    26-30, F
    3 Responses Oct 21, 2009

    New to Chiari

    I was diagnosed in April of this year after a long bought of headaches, pressure in my head, ringing ears, losss of fine motor skills, hoarse voice, stiff neck, extreme fatigue, trembling hands, dizziness - the list goes on.  So far the doctor's say let's wait and see. ...
    Snoopy7904 Snoopy7904
    9 Responses Jun 8, 2009

    My Experience With Cm.

         Growing up I had bad hand-eye coordination, my eye sight kept getting worse, and I couldn't walk a straight line. Other symptoms I had included a constantly runny nose and I was told when snored it sounded like I was drowning. During my Sr. yr of high school (10 yrs...
    DaveB82 DaveB82
    26-30, M
    1 Response Jan 11, 2012

    Lena's Story

    Hello, My name is Lena' and in Novenber 2008 I was told by my doctor that I had arnold chiari malformation type1. They told me that it was some thing that I was born with, but because at the time i was born I was a healthy baby born on time with no health problems...
    Chiaritype1 Chiaritype1
    26-30, F
    1 Response Nov 7, 2009

    Still Undiagnosed

    Hi Im Cyndi, I have been suffering awfully for many years but up until this past 6 months I had chalked the memory loss, scatter-brained, headaches, light sensitivity, nausea all up to different things. I also have back issues so my Drs always attributed fatigue and all over...
    cynrose75 cynrose75
    36-40, F
    2 Responses Aug 29, 2012

    One of Two People In My Family to Have It

    I am 25 years old and have been dealing with debilitating migraines since I was 15 after hitting the base of my skull on a counter upon standing. About two years ago they became so frequent that i was getting them every day (and still am). After having my billionth MRI of my life...
    Casehead Casehead
    2 Responses May 14, 2008

    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 very easy. My neck hurts a lot.
    sj112760 sj112760
    1 Response Aug 8, 2014

    Decompression #2

    I had my first decompression surgery in 2004 with good sucess. I started having severe neck stifness/pain, vomiting, headaches, blurred vision, right side of my face is numb and fatige. My current mri showed a cyst on my cord up in my neck and my surgeon said things still look...
    kentanlem kentanlem
    3 Responses Dec 4, 2008

    Diagnosed With Acm1 Surgery Soon

    Hi everyone, I am a 27 year old woman a mother of 2. and a wife. I have been sick for many years. finally after being put on medicines for pain in my legs and arms and servere headaches. nothing was working i went to a chiro also had shots and the back and neck cracking and it...
    pebbles2125 pebbles2125
    26-30, F
    2 Responses Nov 2, 2009


    I have been suffering from severe pain, in the back of my head where the "knots" are and severe pressure. It usually happens when I laugh, or when I am nervous, and when I am doing something like bending over or carrying something heavy. On top of this, I also have...
    Smkrebs724 Smkrebs724
    18-21, F
    2 Responses Sep 10, 2008

    Delayed Symptom Onset? This Is More Full Of Questions That Being A Full Story

    Okay, I was diagnosed with Chiari at age 19 (important to note that I was diagnosed bipolar I, panic disorder, and ADHD and treated, or I should say over medicated). I went to college after multiple inpatient hospitalizations (including on in college), but I graduated with a BS...
    AgentScully1013 AgentScully1013
    26-30, F
    4 Responses Feb 6, 2011

    Do You Have Acm?

    After a car accident in 2002, I was found to have Arnold Chiari Malformation. It seems that the lack of knowledge in the neurological field on this disorder is widespread. I spiraled downhill for 2 years before I found the Chiari Institute in Long Island, N.Y. It was only...
    L4Jesus L4Jesus
    41-45, F
    4 Responses Jun 30, 2007

    Dealing With Alot And Looking For Answers..

    Hi. My name is Crystal. I am 25 years old and I was diagnosed with Chiari 1 Malformation. I was Rear end 3 years ago and almost exactly a year after that accident is when i started experiencing headaches. In February of 2010 i was hospitalized for two weeks for headaches...
    ibabyblue86 ibabyblue86
    22-25, F
    6 Responses May 17, 2011
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