I Have Chiari Malformation Type 1

Personal Stories, Advice, and Support 109 People

    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 a neurologist to consult with. After an MRI, I was told I had type 1 Chiari Malformation. My neurologist didn't make that...
    burtala burtala
    18-21, F
    2 Responses Mar 27, 2014

    Just Diagnosed After 15 Years Of Pain!!! Chiari Malformation, Type 1

    I am a 37 year old single mom of two great kids.  I've had such severe symptoms for the last 15 years.  I've been diagnosed and treated for everything and anything that modern medical science can even imagine and then some. I have been out of work for the last 17 weeks...
    susanerickson susanerickson
    36-40, F
    4 Responses Dec 5, 2010

    I Don't Know How Much More I Can Take.

    I don't want to wait another 6 weeks with notning to do but think about it. I'm trying to find ways to keep my mind off everything but I don't work and cleaning only takes up so much time. evertime I sit with nothing to do thats the first thing that comes to mind. another...
    deleted deleted
    Oct 3, 2012

    Chiari Malformation

    HI so i just got diagnosed with CM 1. after 2 years i finally feel like im not crazy. i have debilitating headaches and vision problems. im on naproxin right now while awaiting an app. with a neuro sergeon for his opinion if i need surgery. the medicine has horrible side effects...
    kap1234 kap1234
    13-15, F
    Nov 5, 2012

    A Tale Of 3 Rare Diseases (cm, Sm & Eds) Chapter 1

    I can remember VIVIDLY the first time I got the ringing in my ear. I was in first grade at a school assembly and as I sat there waiting for it to start my right ear went deaf n then the ringing started. I thought aliens were coming for me! I never told a soul bc I though no one...
    zipperhead23 zipperhead23
    31-35, F
    Feb 23, 2012

    Starting A Non-profit For Chiari Malformations!

    I am asking for your story and perhaps a photo of you as well. You can read about who I am and about why i’ve decided to start this non-profit org. But for the website, I want people to see you- to understand you. I want to raise awareness of this condition and help people see...
    ArtsiMom ArtsiMom
    22-25, F
    May 11, 2012


    i am set up for the surgery in Co. in dec. however i have recently found a Dr. on line that is in UCLA Ca. i have never heard of him and i'm wondering if anyone else has i need so feedback.. if i was to have surgery in Ca. my costs would go down a huge amount. but dont want to go...
    ginajoep ginajoep
    36-40, F
    1 Response Oct 9, 2009

    Found Out I Have Chiari 3 Years Ago.

      I'm 16 years old, and around 3 years ago doctors found that I had a Chiari Malformation. This was discovered during an MRI scan. I was having an MRI to try and rule out anything that may had been causing severe migraines that I have had since nine. Luckily, the doctors do...
    ImperfectStranger96 ImperfectStranger96
    1 Response Aug 9, 2012

    I hate playing the waiting game.

    They found mine early b/c at the time they were checking up on my seizures And they just saw it. So now I just have to wait till I'm experiencing severe symptoms and it has fallen enough. It's been two years I'm just wondering how many more I'll have to wait. I just keep imaging...
    Alisaperne6446 Alisaperne6446
    18-21, F
    Nov 19, 2014

    Frustrated And In Pain.

    Haven't been on here in awhile... I had my decompression surgery May of 2011 and my symptoms went away until May of 2012. Within the past year everything is slowly starting up again..somedays better than others. I found a list of symptoms another person had posted on a website...
    sraemarie36 sraemarie36
    1 Response Mar 24, 2013

    I Think I Have Chiari..opinions Plz?

    I am a 23 year old female. I have suffered from severe headaches everyday for as long as i can possibly remember. I have taken everything possible for them and have been givin meds by the dr for migraines and nothing helps. Ive been to a chiropractor in hopes maybe its tension...
    ebowers89 ebowers89
    1 Response Oct 11, 2012

    Everything Is Sinking In....

    I skipped out of the hospital so fast I didn't ask any questions. Since then I've read my discharge letter 20 times - Arnold-Chiari malformation, subarachnoid not excluded, cerebellum 7mm descended below foramen magnum, very little csf around medulla - I know more about the...
    MarleyBow MarleyBow
    26-30, F
    1 Response Oct 28, 2013

    Teach Me To Understand That They Do Not Understand

    Well...my name is krissy. I am 17, a senior in high school. My headaches and started in october of '06 when i was twelve with no specific reason for onset. They became 'chronic migraines' in sept '09 and the dr who read my MRIs failed to recognize my 8mm cm1 as anything worth...
    krissykayy krissykayy
    16-17, F
    1 Response Sep 10, 2011

    My Chiari Story

    I was diagnosed with Chiari Malformation type1 in 1999 aged 19. I had suffered with headaches for a number of years before my diagnosis which were considered to be migraines, my Mum also has Chiari but we were told as 'Chiari isn't hereditary' there was no chance I would have...
    Cymraes79 Cymraes79
    26-30, F
    9 Responses Sep 24, 2009

    I Am Scared

    I have Chiari Malformation type 1 and I have known this for over a year. My mother had the surgery for this five years ago and it horrified me. She couldn't walk on her own for over three months. She doesn't remember anything for over a month. She had bad headaches for...
    naenae72 naenae72
    4 Responses Apr 29, 2009

    Just Got Diagnosed

    I'm a 38 year old single mom who just found out I had Chiari malformation.  I am still learning about it.  I have had headaches for as long as I can remember.  I have told every doctor I have ever seen throughout my life and until now, no one has ever sent me...
    andreel andreel
    36-40, F
    2 Responses Oct 13, 2009

    Chiari Malformation

    Hey everyone! I'm new to experience project as of like 5 minutes ago. I don't know exactly why I joined... I just need some support. My mom had been having neck/back pain, headaches, and numbness in her arm severely. Headaches she's had since she was a kid. She had an MRI...
    GodsListener98 GodsListener98
    3 Responses Dec 11, 2012


    So about a month ago i was told i had Chiari malformation Type 1 they found it druing and MRI i was getting for my hearing problam and Today i got the call that i am going to see a Surgon on the 8th of Oct is there anything i should should know going in to this... everyones help...
    Darkgirl09 Darkgirl09
    26-30, F
    Sep 23, 2009
    Rielynnx3 Rielynnx3
    18-21, F
    Sep 18, 2014

    Just Found Out I Had Cm1 About Last Week

    I just found out i had chiari about last week. It all started while i was at work and my speech got very slurred out of nowhere. So about an hour later i was walking around my job and then my whole left side of my body just went out, leg and all. To the point where i was...
    Blessed415 Blessed415
    Feb 27, 2013

    I Had A Really Rough Patch This Last Few Years, And This Was Just The Cherry On Top.

    Hi. I had been looking for people I can share this with for a while now. My life went down hill in a heart beat about three years ago. I was a single mother of two beautiful babies who were 1 and 2 1/2 at the moment. I had to work my butt off for them to have everything they...
    JAS2013 JAS2013
    26-30, F
    Nov 13, 2013

    Never Ending Battle

     Twenty three yrs ago I fell 25',crushing right heel,herniating  4 disc's in my lower back, 6 cervical.   Five Year's of relentless pain went by before they even diagnosed my spinal condition thinking the fall only damaged my foot. Since My wife at the time was a...
    Slammed Slammed
    51-55, M
    Oct 9, 2009


    I have people (who don't have Chiari and know nothing about it) telling me almost every day why I get headaches and what I need to do to stop them. I appreciate their concern, but sometimes I just want to tell them to **** off. If I could prevent myself from having headaches I'm...
    sraemarie36 sraemarie36
    Mar 30, 2013

    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 pains after I got into a sledding accident. I had an MRI done and they said I have chiari 1 malformation. I met with a neurologist...
    jfernau jfernau
    18-21, F
    Jul 20, 2014

    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 of bed in the morning and ended up quitting my nice cushy $12 an hour, full time office job. (That's good pay here in North Carolina.) I went to a...
    harmony090987 harmony090987
    26-30, F
    Jun 22, 2014

    I was diagnosed last March with CM1

    and a cyst in my memory center. Since then I have tried to learn as much as I can about Chiari, mainly because the doctors all seem either clueless or uncaring. That and I already have a thick medical file, thick enough that I was very upset that the Chiari had gone undiagnosed...
    Viejna Viejna
    36-40, F
    1 Response Jan 15, 2014

    DIAGNOSIS of Chiari Malformation

    1 Response Sep 18, 2008

    Amber's Chiari Malformation

    Hello..I am new to all of this and still very confused :( My daughter was born on Feb 25 2011 perfectly healthy..when she started to talk, she was saying three words..but suddenly she lost her speech..she had something like a seizure, scared my husband and I like crazy. The...
    AmberGraceMommy28 AmberGraceMommy28
    26-30, F
    1 Response Jan 16, 2013

    How I Found Out I Had Chiari Malformation

    When I was 16 I was in a bad car accident. I blacked out before we hit so I don't remember to much about it. I  sprung my neck, had a concussion, and memory loss. About 2 months later I was having black-outs. Started having more headaches, but it was different, felt more...
    dreamer87 dreamer87
    18-21, F
    1 Response Jan 3, 2008

    My Chiari Story

    My Chiari story began a few years ago when I started getting bad headaches. I thought they were migraines at the time. I struggled with them for a few years, not really thinking there was anything I could do about it. At the beginning of this year, my headaches had gotten to the...
    HaleyOram HaleyOram
    22-25, F
    Jun 1, 2013

    I Have A Chiari Too...

    My neurologist actually found it a few months ago why doing the normal MRI for my epilepsy. He recommended surgery until I saw a neurosurgeon and he said it hasn't even progressed that much and would be risky to do surgery when it wasn't that bad. So yeah so far I'm lucky and i...
    Alisaperne6446 Alisaperne6446
    18-21, F
    Jul 29, 2013

    When Will I Have Relief

    Went to the doctor today to talk about surgry. They can't get me untill mid november. I just found out about the chiari but now that I know I want to feel better. Has anybody have or had had poblems with memory. Dr said it didn't have anything to do with it
    deleted deleted
    Oct 1, 2012

    Just Diagnosed And A Little Scared

    Hey! I am Erin and I am 35 years old and a mother to three wonderful children, one of which also has Chiari. My Chiari was found by accident. I had started noticing that my left arm would tingle and go numb anytime I did anything, especially write, or type, and even trying to...
    erucker erucker
    36-40, F
    1 Response Sep 8, 2013

    7 Years Later

    I was diagnosed with chiari type 1 in '07 at age 16...it was one of the most heartbreaking days of my life.(for a 16 year old girl everything is over the top) I only had four months from finding out until my surgery date and to say I was unprepared is an understatement!I had the...
    hopel90 hopel90
    22-25, F
    Jul 25, 2013

    Just Diagnosed

    I have just been diagnosed with Chiari ! after a MRI for numbness/tingling in face and hand (left side).  I have had migraines (different stages) since I was 21.  I have bursitis (so they tell me) in both rotor cups which I have had to get cortisone shots in each. ...
    CeeLee CeeLee
    2 Responses Feb 14, 2008

    My 3 Year Old Son Has Chiar Malformation Type 1

    On July 31 st of 2007 My son was diagnosed with Chiari Malformation Type 1.  He started out having seizures and had an MRI in the pretty BIG city hospital but they didn't find it there.  Two weeks later he was hospitatlized again for the seizures and they couldn't...
    concernedmother concernedmother
    22-25, F
    2 Responses Sep 7, 2009

    Well That Came Out Of The Blue...

    A few nights ago, during intercourse, I got a sudden, severe headache - as though I had just been hit round the back of the head, with a metal bar. I rolled around in pain for about ten minutes, when it eased I ate some food and went to bed. Next morning the headache came back...
    MarleyBow MarleyBow
    26-30, F
    Oct 28, 2013

    Chiari Malformation Type 1

    It all started early August 2012. I was having terrible nausea, stomach pain, and vomiting. I went to the ER, and the doctor said it had to be my gallbladder. I had a ultrasound and it was perfect so I then got a HIDAscan, it was also clear. My family doctor then kinda just...
    mnhdjb mnhdjb
    16-17, F
    2 Responses Oct 29, 2012

    Starting A Non-profit For Chiari Malformations!

    I am asking for your story. Perhaps a photo of you as well. You can read below about me, and about why i’ve decided to start this non-profit org. But for the website, i want people to see you- to understand you. I want to raise awareness of this condition and help people see...
    ArtsiMom ArtsiMom
    22-25, F
    2 Responses Nov 11, 2011

    I Was Diagnosed With Chiari Malformation I More Than Ten Years Ago

    It is really disturbing to find out that I was diagnosed with Chiari malformation I more than ten years ago (
Low lying cerebellar tonsils projecting approximately 7-8 mm below 
the foramen magnum suggestive of Chiari 1 malformation. The finding 
was evident on the prior...
    lostfortenyears lostfortenyears
    2 Responses Jan 9, 2013

    Is There Anything That Helps Chiari Malformation 1....? There Has to Be.

    I don't understand at all. This is absolutely rediculous. Yes I have Chiari Malformation 1. I found out about 6 months ago, which I am sortof glad but at the same time not. What is the freaking point, if there is no cure, and nothing that really helps. But at the same time...
    SaraNicoleS SaraNicoleS
    18-21, F
    30 Responses Sep 2, 2009

    I Just Want To Feel Normal!!!

    I was diagnosed 2 years ago with chiari malformation. It was discovered on MRI while being diagnosed with pseudo tumor cerebri. The pseudo tumor symptoms consisted of headaches every day, visual disturbances, and nausea. Since everyone was so focused on my PTC the chiari...
    razberry80 razberry80
    36-40, F
    Jul 9, 2013

    I Just Had The Surgery A Week Ago

    So, I'm 21 years old and I have a 3 month old son. I grew up in Conifer Co, and once I hit my teenage years I started getting these blackouts and dizzyness. It started getting worse over the years and I honestly just thought the pain was from my Mother hitting my and punching me...
    anayamom anayamom
    1 Response Jun 30, 2011

    My 11 Year Old Has Chiari

    My daughter started showing symptoms at 3 weeks old, she had apnea , projectile vomitting and gagging. She was hospitalized with a kidney infection and has been in and out of the hospital every since. The nausea and vomiting never went away and at 3 she started getting headaches...
    Alispen Alispen
    36-40, F
    Jul 30, 2013

    Doctors Do Not Listen

    I called my nero dr about 6weeks ago with some alarming systems. She told me to go to the ER and see the oncall nero. I went to the er and waited for hours to see a doctor. When I finley got a bed the doctor half listem to me if that much then left the room. The nurse came in and...
    deleted deleted
    1 Response Oct 8, 2012

    Just Found Out I Have Chiari.

    I am 18 years old, a college athlete, and I just found out I have Chiari malformation one. It all started in Aug 2009 I left for college very sick. I didnt play at first because of how sick i was. When I started playing I would black out, have blinding head aches, double...
    wasoccer wasoccer
    18-21, F
    4 Responses Oct 23, 2009

    Learning Disabiltys And Chiari 1 Malformation

    To start I can not spell so anyone that wants to grade my story don't bother. In 2008 I had a sizure doctors did not know what to make of it. When I told them of systems I have had all my life the doctors said I have Complex Partial Seizures. The doctors couldn't ecplain some of...
    deleted deleted
    Sep 29, 2012
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