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  • Arnold Chiari Malformation With Cyst in Spinal Cord

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    Old 08-28-2006, 06:38 PM   #1
    saf35
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    Unhappy Arnold Chiari Malformation With Cyst in Spinal Cord

    Hi,

    I'm a 35 year old female and I've recently been diagnosed with having Arnold Chiari Malformation with a Cyst in my Spinal Cord... I'm scared and confused by all the information and by the thought of surgery.
    I would really like to learn more about this and to communicate with people who are also dealing with this.. Any input would be greatly appreciated..

    Thank you - Shelly

     
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    Old 08-28-2006, 07:57 PM   #2
    Danialla
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    Re: Arnold Chiari Malformation With Cyst in Spinal Cord

    I had surgery for my ACM about 10 yrs ago, and so far so good! Please do not worry too much.......

    There is a wonderful orginization called "ASAP" that can help you with information and resources (drs., etc).

    What symptoms led you to the doctor?

     
    Old 08-29-2006, 07:44 AM   #3
    saf35
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    Re: Arnold Chiari Malformation With Cyst in Spinal Cord

    THANL YOU FOR RESPONDING !!!!
    I was in a car accident in 1990 and shortly after that started having sharp stabbing pains in my head. I did have catscans with no answers. Over the years I have been to the Doctors several times with complaints of the sharp pains and constant headaches.. I was told they could be anything from migraines to cluster headaches or tension headaches.. A few years ago I ended up in the Emergency Room with the sharp pains so bad that I actually thought I was going to Die. They did a catscan and I was told that they found three lesions on the left side of my brain and to follow up with my Doctor for an MRI. I did follow up and had an MRI, the Doctor told me I didn't have lesions that I had extra space around my vessels and that my brain was positioned lower. (whatever that meant). Since then I have been to the Doctors several more times with the same complaints but now including numbness in my right hand and foot. And once again told it was nothing.. A few months ago I went once again and this time I told him I have constant headaches, sharping stabbing pains in my head, numbness in my right hand and right foot, some twitching on the left side of my mouth and around my left eye, pulsating feelings in my legs and arms with some weakness in my arm.. It was finally then he said lets send you to a neurologist. I finally was told an answer - I have Arnold Chairi Malformation.
    He sent me for another MRI except this one was of my neck and back. It came back that I also have a Cyst in my Spinal Cord.. I have since meet with a neurosurgeon and now the decision of surgery is basically in my hands.

     
    Old 08-29-2006, 10:12 AM   #4
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    Re: Arnold Chiari Malformation With Cyst in Spinal Cord

    Be thankful of the diagnosis. My sister, 50, had surgery last year for Chiari and she is so thankful. She is back to her normal smiling self. She dealt with the headaches, blacking out, couldn't bend over, or sneeze!!!! she is soing great and after the surgery was not a bad recovery!!!!! Now you can barely see the scar under her hair............surgery is a lifesaver....don't be afraid!!!!! you'll be so glad you did it and you will like your old self!!!!!
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    Old 08-29-2006, 10:32 AM   #5
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    Re: Arnold Chiari Malformation With Cyst in Spinal Cord

    Shelly,
    My younger sister had this surgery about 4 years ago. She is doing very well today. Thank God she found out what the problem was and was able to get a neurosurgeon who had experience with this.

    Please search the net for information and support. They are out there. I visited many researching as much as I could when my sis had her surgery.

    Best wishes to you, Dodi

    Last edited by moderator2; 08-29-2006 at 10:51 AM.

     
    Old 08-29-2006, 11:24 AM   #6
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    Thumbs up Re: Arnold Chiari Malformation With Cyst in Spinal Cord

    Shelly,

    My sister has already responded to you (Flintrock). I am now 51 years old. I actually had my surgery almost three years ago. I had horrible headaches, kept going to the doctor and he kept telling me I was having stress headaches. After a year of this, I finally convinced him to send me to get an MRI. He finally agreed. I kept calling him for the results of the MRI and after two weeks ( he is my brother-in-law). What a quack!! he told me that I have a chronic sinus infection and fluid on my brain. He sent me to an ENT and he is the one that gave me my diagnosis of Chiari Malformation. This is a birth defect in which your brain is literally sliding down your spinal column and preventing your spinal fluid from flowing properly. Along with headaches, I has naseua, blackouts, numbness in my hands and one leg. It was the most horrible experience I have ever been through in my life. I could not cough without going to my knees. I could not sneeze without going to my knees, I could not look up or down with getting dizzy. The blackouts just came as they pleased, no warning. After surgery I had a full recovery!!!!! Don't worry about the surgery, you will feel like a new person. After recovering of course. Get the surgery!!!! I will keep you in my prayers because with God anything is possible. Let me know how you are doing.
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    Old 08-29-2006, 06:51 PM   #7
    Marconis
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    Re: Arnold Chiari Malformation With Cyst in Spinal Cord

    I am 15 and was diagnosed with Chiari 1 just this April. My tonsils are a herination of 4 mm (shown in cervical MRI and brain MRI). Blprteys, I am not positive, but I think what you described about the brain sliding down the spine is actually Chiari 2. I am very fortunate to have The Chiari Institue in Greatneck, NY just about 45 minutes away from me. I have not gone there for evaluation, but I think I am going to sometime this year jsut to see what they say. My neurosurgeon said that surgery for me is not reccommended because I have no syringomelia and a small herination with minimal symptoms. My symptoms are headaches that start at the neck and go along the sides of my head. I get a little dizzy when I get up from sitting down, even if it is just for a few minutes. I have occasional lightheadedness and sore neck, some blurred vision. They come and go, but headaches are almost constant. I can still complete daily activity jsut as I always could, so I am happy for that. I am a hypochondriac and I research things as much as possible. If you visit the Chiari Institute website, they have a ton of videos that will give you a full education on the condition. I also should add that I have scoliosis.

    Last edited by Marconis; 08-29-2006 at 08:39 PM.

     
    Old 08-30-2006, 06:37 AM   #8
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    Re: Arnold Chiari Malformation With Cyst in Spinal Cord

    Marconis,

    If you are having that many problems, I don't see how you are coping everyday. I coped too, but it was very hard. I will check out that website. If it hadn't been for the support I had from my boss who allowed me to continue working in that condition and from my family. I wouldn't have made it. I wish you success.
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    Old 08-30-2006, 08:13 PM   #9
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    Re: Arnold Chiari Malformation With Cyst in Spinal Cord

    The symptoms aren't severe, that's how I cope

     
    Old 08-30-2006, 09:32 PM   #10
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    Re: Arnold Chiari Malformation With Cyst in Spinal Cord

    How long have you had the symptoms?

     
    Old 08-30-2006, 09:43 PM   #11
    saf35
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    Re: Arnold Chiari Malformation With Cyst in Spinal Cord

    I just want to thank everyone for their responses.. Sorry I didn't thank you sooner.. My sons started school this week and daughter has been sick.. Its been a little busy..
    It actually feels good to be in touch with other people who are familier with this, its so just new to me and it seems like so much to understand.

    From the responses I have read your symptoms seem so much more then what Im experiencing. I guess thats another question do you eventually get more symptoms as time goes by ?

     
    Old 08-30-2006, 10:26 PM   #12
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    Re: Arnold Chiari Malformation With Cyst in Spinal Cord

    Hi!! My son who is 7 has Chiari, he had his surgery in March. I asked the surgeon before he had his surgery what the symptoms are and she said that they vary, in a wide range. My son had all sorts of crazy things happening to him, from having trouble swallowing to hallucinating.... and of course, the never ending headaches, and back pain. My point is just that your symptoms milder, but it could be just that they are different... anyhow, I hope you feel better about the surgery now.

     
    Old 08-30-2006, 10:42 PM   #13
    Marconis
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    Re: Arnold Chiari Malformation With Cyst in Spinal Cord

    I have had headaches for about two years, and back pain I have because of scoliosis. The other symptoms started on August 10th, while making my way to the doctor to check up on my spine. I don't know if it was anxiety or because of the Chiari, orrrr because I may have Lyme disease (getting tested for that soon). I have a wide range of symptoms as well, but I don't really notice them as they just seem like natural body ailments. I guess now is the time to list ALL of them, even if I don't feel they are connected.

    The most noticeable/recurring.

    ~Headache(Anywhere from a pressure headache to a cluster)
    ~Anxiety
    ~Cracking/Popping in joints (including neck)
    ~Slightly sore neck in mornings (possibly from sleeping?)
    ~Slight pressure feeling in back of neck
    ~Increased "floaters"
    ~Dizziness when getting up from sitting down (usually lasts a minimum of 10 seconds)
    ~Sore throat (Possibly from TMJ/Lyme)

    Symptoms that I do not notice every day.

    ~Lightheadedness
    ~Blurred Vision
    ~Very faint tingling in hands/feet
    ~Trouble getting thoughts together (Usually when I am panicing)
    ~Fatigue
    ~Pain in ears
    ~Pressure behind eyes

    Last edited by Marconis; 08-30-2006 at 10:50 PM.

     
    Old 08-31-2006, 07:29 AM   #14
    blprteys
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    Re: Arnold Chiari Malformation With Cyst in Spinal Cord

    In my case the systems progressively got worse and more intense. When they did my surgery, they told me they had never seen a brain so tight in the spinal column. It started with headaches and a little dizziness, and within that year, it was so horrible I couldn't hardly stand it. I was on strong pain medication for about the last six months before my surgery was finally scheduled. I had my surgery at UAMS in Little Rock, AR. I was in ICU for two days and spent one day in a room and they let me go home. I haven't had any trouble since my surgery. My recover was about 6 weeks. Good Luck
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    Old 08-31-2006, 09:41 AM   #15
    Marconis
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    Re: Arnold Chiari Malformation With Cyst in Spinal Cord

    I have heard nothing but good things when it comes to recovery after surgery. If my scoliosis progresses after I have a brace (hopefully it won't progress to the point where I need one) or my symptoms get unbearable, then decompression will be number one priority.

     
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