I Need to Know More About Chiaris Malformation

Support, chat, personal stories and community for Arnold Chiari Malformations Type I and II 39 People

    Up In the Air

    hello, i am the mother of a 33yr daughter w/chiari 2.  i am not very computer  literate, trying to learn, and helping her to connect with people like her. do we need a writing prompt?  looking forward to chatting more about her experiences. She has multiple...
    parker parker
    61-65, F
    May 25, 2007

    My Path

         In 1997, at the age of 40, I began my struggle.  I was in a very bad head on car wreck.  The next day my head, my neck, left arm and shoulder were very sore.  I had a seat belt on and an air bag.  I initially thought I was okay...
    bog57 bog57
    51-55
    1 Response Aug 27, 2008

    Getting Ready For Surgery

    My fiance was diagnosed with Chiari about 6 months ago. After several weeks of pain she finally went to her doctor and they told her what she had. Luckily we live in western Pennsylvania and there is an excellent neurosurgeon in Pittsburgh. We went to the doctor at the Hillman...
    burghman burghman
    22-25
    Jan 18, 2008

    Confused

    Hello , my wife was just diagnosed with this problem, i'm confused because her doctor says that it won't need surgery however sending her to a neurosurgen but everything that I have read leads to surgery, my question is, how is the prognosis? is there any dangers into the surgery...
    shawnbecky2 shawnbecky2
    31-35, M
    Jun 2, 2007

    Just Sharing

    Hi I  am 37 years old and just found out I have Chiari Malformation . I'm not sure what one yet . But I can not believe all these things that I been feeling , are all to do with this . When I use to tell people all the things I would be feeling . They would just laugh and...
    Trinny Trinny
    36-40, F
    Nov 6, 2007

    My Brother

    my brother john is in the airforce. he was just diagnosed with this a couple weeks ago. have any advice for him? should he get the surgery?
    airforce1 airforce1
    16-17, F
    2 Responses Oct 18, 2007

    It Is All In Gods Hands

    Sept 30th 2006, a day that changed our famliy. It was Homecoming for our PARA Football leauge. The boys just had their pictures taken and the game was starting. At 6:50 pm a player went down in fumble recovery. It got quiet, we all were looking for our child, I kept thinking...
    KristinSue KristinSue
    36-40
    Oct 1, 2008

    Why Didn't My Surgery Work?

    I've been suffering with Chiari for the past 4-6 years. It took me years to be accurately diagnosed.  I don't have time now to tell my story, but I have a question for anybody reading this.  I had decompression surgery October 2006 and my headaches aren't better. ...
    allison69 allison69
    31-35, F
    Oct 27, 2007

    IT Is Ok

    In March of 2006, i had the surgery for Chiari 1. I was very scared when i found out that i had this problem going on, all i could think of was this is my brain, my spinal cord and if they messed up it would mess me up for the rest of my life. I lived with migraines for 5yrs and...
    1moretime 1moretime
    22-25, F
    2 Responses Apr 1, 2007

    My Son.

    In March of 2006 My 6 year old son fell at school and hit his head on the black top.  For days he wouldn't quit vomiting, numerous trips to the Doctor & E.R.  they finally found out he had a chiari malformation and the trauma from the fall he was smashing his brain...
    cabayaudi cabayaudi
    31-35, F
    Oct 12, 2007

    On My Way to Surgery

    Hi! My name is Missy,I was diagnosed with Chiari1Malformation last summer. I started out becoming dizzy,followed by passing out,having severe head and neck pain,confusion(unable to concentrate),fatigue,and having a hard time sleeping. I was sent to a neurologist who told me all...
    aggravatted aggravatted
    36-40
    1 Response Nov 15, 2008

    Chiari For the Masses

    I've had slowly worsening chiari symptoms since I was 9 years old, for a long time I thought they were simply normal headaches. At age 14 my headaches picked up the pace to the tune of 3-4 times a week. Going to the hospital they admitted me as an adult, something I wish I had...
    Clovis Clovis
    18-21, M
    Jun 18, 2007

    Symptoms

    he had severe migranes, and had to stop training with everyone else. he would have graduated last week. but he is in a special place for it now.
    airforce1 airforce1
    16-17, F
    Oct 18, 2007

    More Information For You

    My wife had the surgery last year, April 3rd to be exact. For more information please feel free to check out her website at www.devinsdiary.com or my myspace account at www.myspace.com/chris_kalisz I am certain that she would love to talk with you about this and try to put you at...
    tattss1 tattss1
    26-30, M
    Apr 2, 2007

    Uninsurable?

    I happened to see an advanced copy of Sicko, Micheal Moore's new documentary, and caught a glimpse at a list that said those with Chiari Malformation might be considered uninsurable.  Since I was diagnosed this last year, but am asymptomatic and don't need surgery, I wasn't...
    kaida kaida
    22-25, F
    1 Response Jun 21, 2007

    My 16-year-old Daughter Was Diagnosed With Type I Chiari's Malformation....

    ....just last week.  she's been suffering from migraines (bunches of dif. kinds) for most of her life, ever since she was little.  migraines run in our family. i've had terrible ones for years.  about a month ago, she started having them WAY too frequently...
    MysticWriter MysticWriter
    36-40, F
    9 Responses Mar 17, 2007

    Chiari For the Masses

    I've had slowly worsening chiari symptoms since I was 9 years old, for a long time I thought they were simply normal headaches. At age 14 my headaches picked up the pace to the tune of 3-4 times a week. Going to the hospital they admitted me as an adult, something I wish I had...
    Clovis Clovis
    18-21, M
    Jun 18, 2007

    One Long Year

    My name is Courtney Freeman, I am 29 years old and have been married for 8 years and have two beautiful daughters who are ages 3 and 8. About one year ago, I woke up with the worst headache I have ever had. By mid afternoon, the pain was intolerable so my husband took...
    Hrting Hrting
    26-30, F
    Oct 26, 2007

    Under the Knife In May 07

    I have had the symptoms of ACM for the past 7 years.  Many doctors just thought I had sinus problems or just plain old headaches.  With treatment for those not working, I got another opinion from a 4th doctor (Dr. Knox in Lexington, KY).  Another MRI was done and a...
    KevinScott KevinScott
    31-35, M
    1 Response Jun 18, 2007

    My Name Is Shorty I Have Chiari1

    i was diagnosed in 2006 with chiari type 1. i have alot of symptoms from it. i take diamox to relieve the csf. fluid build up.
    shotry shotry
    31-35
    May 21, 2008

    Chiari Type 1

    I have been a migraine suffer since 2000, and have taken several medications to reduce the frequency. (All have been unsuccessful) I have went to a Neurologist, and was told all was well. I began receiving abortive medications, since the migraines were so severe. In December...
    Robertsgirl Robertsgirl
    36-40, F
    Jul 17, 2007

    Chiari For the Masses

    I've had slowly worsening chiari symptoms since I was 9 years old, for a long time I thought they were simply normal headaches. At age 14 my headaches picked up the pace to the tune of 3-4 times a week. Going to the hospital they admitted me as an adult, something I wish I had...
    Clovis Clovis
    18-21, M
    1 Response Jun 18, 2007

    Up In the Air

    hello, i am the mother of a 33yr daughter w/chiari 2.  i am not very computer  literate, trying to learn, and helping her to connect with people like her. do we need a writing prompt?  looking forward to chatting more about her experiences. She has multiple...
    parker parker
    61-65, F
    May 25, 2007

    Also looking for information from those

    who have it, because personal experience is best for getting all of the true facts.
    littlegrayfeather littlegrayfeather
    36-40, F
    1 Response Jan 8, 2015

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