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  • syringomyelia

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    Old 08-14-2003, 06:44 AM   #1
    kathryngoddard
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    Post syringomyelia

    they said what my daughter has is syringomyelia, which is on the bottom of the anencephaly scale. they are both neural tube defects. the problem is the symptoms don,t usally start till 25 to 40. so having a 5 year old with symptoms is baffleing. i have never heard of this any insight would be great

     
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    Old 08-14-2003, 07:36 AM   #2
    PainInTheNeckJackie
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    Kathryn... I'm sorry that I cannot shed any insight on your issue But I did want you to know that my thoughts and prayers are with you and your daughter in hopes that you find out as much info as you possible can... remember to think positive

    ------------------
    Jackie
    ***************
    Left paramedian subligamentous herniation C5-C6 causing left foraminal stenosis and cord compression;
    ------------------------
    Right paramedian subligamentous herniation at C6-C7, abutted against the vetral aspect of the spinal cord

     
    Old 08-14-2003, 04:07 PM   #3
    winged phantom
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    HI Kathryn,
    The syringomyelia is "the formation of a fluid-filled cavity (a syrinx) in an injured area of the spinal cord", according to one page...

    There are a few people here who have had something similar if you do a search here for the syrinx, as there's not much info here under syringomyelia. You might also try searching on the Back Problems forum for those terms, too, to see what comes up.

    I'm so sorry to hear about this diagnosis; did the doctor give you any information or guess as to why it has developed in someone so young as your daughter? Has she had any accidents/injuries involving her spine? In other words... is there more to the story that you do not yet know? And then there's the all-important.... what can be done to treat it? Does your daughter need to see a specialist?

    Those are some of the first questions that I thought of; I'm sure there are hundreds of others you will want to ask as well...

    Good luck to you and your little ...
    wr

    [This message has been edited by winged phantom (edited 08-14-2003).]
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    Old 08-14-2003, 04:42 PM   #4
    cbjordan
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    Kathryn, I posted about a month ago on this board, having recently just been diagnosed with syringomyelia myself at the age of 65! This is about as unusual as your daughter being diagnosed at the age of 5. I havn't had anybody else reply to my condition as it is supposed to be a very rare thing. There are different theories as to why you have this, and one is that it may be something that you are born with, or it can come from some trauma to the spine, they just don't know that much about it yet. In my case, it is causing me to have weakness in my legs and neuropathy in my feet, which is very, very painful. The dr. is giving me neurontin which is helpful. I have seen a neurologist as well as a neuro-surgeon and he told me that he wouldn't want to do surgery on me unless it gets to the point where I can't control my bladder/bowels. It is a very delicate surgery which can end in paralysis, so don't want it unless there is no other choice. When they do do this surgery, they usually insert a drain that is permanent. I'm so sorry to hear about your little girl. I had a son who had muscular dystrophy, he just passed away last year at the age of 37, so I know what it is to have a child with a serious health problem. If I can be of anymore help, please just let me know.

    Celia

     
    Old 08-17-2003, 09:07 PM   #5
    GoingOn12
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    Hi Kathryn,
    Syringomyelia (sear-IN-go-my-EEL-ya)

    The website for you to go visit is ASAP “American Syringomyelia Alliance Project”. [url="http://www.ASAP.org."]www.ASAP.org.[/url]
    You will find ASAP has a wealth of useful information, including a list of recommended doctors who know what Syringomyelia is.

    I have had all the symptoms of Syringomyelia since I was 5 years old, I am now 40.

    I had an automobile accident in 1992 and I have been suffering from Headaches, Migraines and Back Pain ever since.

    I found out I had Syringomyelia in March of 2002 (an entire decade had passed) from an MRI report of my Thoracic.

    The Thoracic is an uncommon location for a Syringomyelia.
    You will find that the majority of Syringomyelia’s are in the Cervical area.

    At the ripe old age of 14, I went to a Chiropractor for severe back pain. I could not stand up straight and I had trouble breathing.
    The Chiropractor took x-rays of my entire spinal cord and found a Syrinx in my Thoracic. My Syrinx is just opposite of my sternum. Ever since my car accident, I have had nothing but pain in my sternum.


    I have just found Healthboards.com this evening and I have already made it my home page. I plan to visit often.

    Good Luck,

    Joseph
    Still hoping for a solution

     
    Old 08-18-2003, 11:34 AM   #6
    kathryngoddard
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    sorry i haven't responed. I have a group in yahoo groups with people who are suffering from this it is syringomyelia support group. for the lady who asked what caused hers the doctor thinks its because of my folate levels when I was pregnant. then the symptoms began because my daughter has a very bad cough when she falls asleep which strains her body which leds to the syptoms starting

    [This message has been edited by kathryngoddard (edited 08-18-2003).]

     
    Old 08-18-2003, 07:13 PM   #7
    cbjordan
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    GoingOn12

    My syrinx is in my thorasic also which is like you say, very unusual. Mine goes from the T8 to the T12 levels, where is yours located?

    Celia

     
    Old 08-19-2003, 06:16 AM   #8
    kathryngoddard
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    It's my 5 year old who has it and I have no idea where all the dr. said is she has several big holes in her spine that contains fluid and that shes sending us to a nuerosurgeon.she didn,t say where they were. she did the it was because of my folate levels when I was pregnant with her

     
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