I Have Syringomyelia

A Syringomyelia anonymous support group with information on diagnosis, treatment, symptoms, along with personal stories and experiences with Syringomyelia. You're not alone. 21 People

    I Have Syringomyelia

    I have just found about 2 months ago that I have syringomyelia. I have it from my c6-t9. I am going to see a neurosurgeon in oct 12 and am very nervous/scared. I know what syringomyelia is but would like more information about surgeries an complications thank you.
    Stronggirl4 Stronggirl4
    16-17, F
    4 Responses Sep 22, 2012

    Hi, I have had this condition

    for 13 yrs now.Mine was caused from injuries at 6 wks old. Ive been told it isnt "big" enough to do surgery and they wont even put a shunt in, cos of the risks. My symptoms are, numbness, can feel hot or cold, chronic right shoulder and arm pain, weakness of muscles, chronic...
    S0ul3zz S0ul3zz
    36-40, F
    Feb 5

    I Have It Too

    Hi there, I've had syringomyelia for nearly 10 years and I'm absolutely fine. Keep positive. Don't dwell on it. Stay strong in the body. Take folic acid. xx
    robandjayneg robandjayneg
    41-45, M
    Oct 2, 2010

    I have had two surgeries already

    for syringo, but I am going to have my third one for a second shunt soon.
    leew123 leew123
    22-25, F
    3 Responses Mar 13, 2014

    I Have This Disease

      i have something called syringomyelia it's a spinal disease where there's fluid in the spine. I took finding out that I also had cerebral palsy and a conversion disorder to discover this. I am one of the lucky ones for now the cyst in my spine is to small to...
    deleted deleted
    26-30
    2 Responses Aug 29, 2009

    and my doc advises against carrying heavy items.

    but so many events i attend, like social service projects and event jobs, require me to do so. and I don't wanna act like a princess and say I can't carry this and that. sigh..
    thequietexplosion thequietexplosion
    18-21, F
    Dec 19, 2015

    I Have Syringomyelia And Fibromyalgia

    I have had extreme headaches, pain and weakness in my left arm and both legs for the last 10 years. As the pain, numbness, tingling and weakness got worse I would continue to go to the doctors with them saying that its stress. I went through an episode several years back with...
    Hopestrengthcourage Hopestrengthcourage
    41-45, F
    Apr 4, 2013

    "i Have Syringomyelia" And Need Someone To Talk To Please.

    "I Have Syringomyelia" and had surgery 2 years ago putting a stint in my spine. It has not helped and my symptoms have gotten worse.  It is the hardest thing to explain to someone what its like to have this. They want to put a stimulator in me since I have problems with my legs...
    billy1088 billy1088
    56-60
    3 Responses May 4, 2012
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