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Spina Bifida

Stacy Lauren BlinkhornStacy Lauren Blinkhorn Posts: 1Member
edited August 2016 in Disabled people
Anyone else with this and how severe?


  • 1BentSpine1BentSpine Posts: 11Member Listener
    I know this is well after you posted Stacy, but I just came across this.  I was born with spiria bifida. It is the most severe kind because I had a meningimyelocele.  However,  because of the location of the opening in my spinal column,  my characteristics are milder then others.  I deal with no bowel or bladder control. And have had surgery to create an urostomy.  I also have hydrocephalus, but was never shunted.  Because of the hydrocephalus, I do have learning difficulties.  In total  i have had 5 major surgeries to improve my quality of life.
    I would be interesting in hearing what characteristics of spina bifida you deal, and what strategies you use to make the best of your life.
  • April2018mommyApril2018mommy Posts: 3Member Listener
    My son was born with SB a year ago. It is pretty severe. His defect was at the top of the spine (in other words, T12/L1). He appears to have no ability to manage his bladder function or walk unaided either. In terms of surgery, he has had the standard back closure operation as well as a surgery on his feet
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