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  • Chiari 1 Malformation concerns??

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    Old 12-17-2009, 10:38 PM   #1
    gloindadak
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    Chiari 1 Malformation concerns??

    Hello my name is Kelly, and I was diagnosed a few months ago. So far they have told me that i have a 9mm. (which is considered mild) and they feel that my symptoms do not go along with Chiari, although I beg to differ. I have seen everyone under the sun and it all leads back to neuro and the Chiari. (go figure!) We are now going back to MRI for a CSF test. I have so much pressure in my neck and the back of my head along with major spasm in my shoulders. I also have numbness and tingling in my hands and feet along with weakness. (especially on my left side) I fell down my stairs the other day due to my leg giving out on me, and the dr. dicounted it. Blurred vision and a hard time concentrating. They make me feel like I am crazy. I have three small kids and a husband that is in the military and not home very often. I am waiting on referrals for a second opinion. I have had headaches for as far back as I can remember but what brought me to go to the dr was I noticed all sorts of symptoms when I worked out. What do you think? Any thoughts? I use to run 3-4 miles a day and I was doing the P90x beach body program and now I can't hardly go up and down my stairs without pain and so much numbness and off balance! Any advice would be appreciated!!

     
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    Old 12-18-2009, 06:12 AM   #2
    jellebeans
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    Re: Chiari 1 Malformation concerns??

    hi there, as far as i know the size of herniation makes no difference to the severity of symptoms. chiari can cause loads of symptoms and i think many doctors do not understand chiari thats why so many people go undiagnosed or told there symptoms are not chiari related. you should get a 2nd opinion definatly. xx good luck
    not sure where u r but the chiari institute new york is well recomended

     
    Old 12-18-2009, 06:19 AM   #3
    gloindadak
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    Re: Chiari 1 Malformation concerns??

    thanks, Im in San Diego. My insurance is allowing me to go to UCSD. I am usually seen at the Naval Hospital. I think they are great too, but like you said they are looking at the size and not the symtoms.

     
    Old 12-18-2009, 08:24 PM   #4
    scout316
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    Re: Chiari 1 Malformation concerns??

    hello

    did they check to seeif you have a tethered spinal cord?this is often the case with chiari patients....the surgery for tethered cord has excellent results so I've been told.

    be careful about having the "decompression surgery"..it could harm you more than help you.sorry,but it's the truth.

    it is true...drs. really don't understand chiari fully...

    I have a 6mm herniation with no chiari characteristics...I had B12 shots for almost 3 years and almost all of my sx were alleviated.so strange that is.I had over 30 sx....I'm serious.

    it definitely is no picnic having a dx of chiari & no two drs. can agree on whether or not any sx are caused by it.......

    just recently I have had the chance of meeting 2 people who had an MRI for other reasons & found out they have chiari...they have NO Chiari SX....figure that one out.

    oh I do so hope you feel better...having little children to raise is not easy...please take care...I'm always happy to try to answer questions about chiari~

    Scout

    Last edited by scout316; 12-18-2009 at 08:27 PM. Reason: missed spelling

     
    Old 12-19-2009, 04:38 PM   #5
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    Re: Chiari 1 Malformation concerns??

    my sister went undianosed for 2 years....finally her ENT looked at her xray and he knew immediately....she had surgery...and is like a new person!!!!!!!!!!!!!!!!
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    Old 12-21-2009, 02:34 AM   #6
    The3DS
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    Re: Chiari 1 Malformation concerns??

    I have been having problems for almost six months and one mri found a 7mm chiari but the neuro I saw discounted it, I need more info. please respond

     
    Old 12-21-2009, 05:35 AM   #7
    jellebeans
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    Re: Chiari 1 Malformation concerns??

    Quote:
    Originally Posted by The3DS View Post
    I have been having problems for almost six months and one mri found a 7mm chiari but the neuro I saw discounted it, I need more info. please respond
    hi,you need to find a doctor who knows about chiari. this shouldnt be dismissed. what sort of symptoms do you have ??

     
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