I Have Diastematomyelia

A Diastematomyelia anonymous support group with information on diagnosis, treatment, symptoms, along with personal stories and experiences with Diastematomyelia. You're not alone. 10 People

    I am 23 and was diagnosed with Diastematomyelia

    before I turned 2 as I was unable to walk. I have had my spinal cord de-tethered, a lipoma removed from my spine, double tibial osteotomies, a surgery on each foot for various deformities and surgical correction of my scoliosis. I have the more severe type 1 and the last few...
    tranzzy tranzzy
    Jul 12, 2014

    My Questions About Diastematomyelia

    Hi everyone, I am 29 years old and I have spina bifida occulta, distematomylia, and scoliosis. I had urinary reflux as a child but my urologist rerouted my ureter to a stronger muscle in my bladder and now I have full urinary function. I have had several spine surgeries starting...
    danielle262125 danielle262125
    26-30, F
    2 Responses Dec 27, 2012

    My Son Might Have Diastematomyelia

      My son is aged 15; when he was 12, he had a snowboarding fall but seemed to be fine. A radiographer diagnosed subluxation on an x-ray but the medic said that this could not, 'in any way', be the case because my son 'should be in a lot more pain if he has a subluxation' and...
    tezzymum tezzymum
    46-50, F
    Jul 25, 2013

    my son Amir was born on 20/04.

    He has been diagnosed with Diastematomyelia and hemivertibra. We have been told that his spinal cord is split as there is a bone growing into it. At the present time he is able to move his arms and legs and there is no visible signs of the problem other then a small hairy patch...
    mohammed241174 mohammed241174
    41-45, M
    Jul 14, 2015

    Newly Dx

    I'm a 63 year old female who was just diagnosed by MRI with Diastematomyelia with tethered cord. I have been incontinent for about 7 years. My urologist was unable to help and felt something else was going on. I decided to do some internet searching. I knew I had spina bifida...
    3 Responses Jun 4, 2011

    Diastematomyelia And Syringomyelia (spinal Cord Cysts)

    I am a 40 year old woman living in North Wales in the UK. I was diagnosed with diastematomyelia, Syringomyelia (Spinal cord cysts), tethered spinal cord and scoliosis in January 2010 after experiencing severe back pain and electric shocks and weakness in my legs. Since then I...
    7 Responses Jan 21, 2013
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