Hi My name Is Andrew and I have Spina Bifida (Myelomeningocele ). I am 45 years old and when I was born I had a large what the Doctors first though was a fluid filled cyst. They just left it alone. By the time I was 9 months old I had been in and out of the hospital a lot. I was getting sicker and sicker .
I was lucky that one of the doctors knew it was not a cyst. He was arguing with the other doctors. The doctor had a friend that was a specialist look at it. That doctor knew what it was and they went from there . I suffer from severe bladder problems I have a tethered spinal cord and that causes me severe chronic pain that I have a hard time managing but I do my best.
I am very lucky. I am able to walk but its not easy. I was paralyzed by Spina Bifida. But, because I was so young, i taught my self how to walk. I feel that's because I never knew I was not supposed to walk. Most of my legs and feet have no feeling and are numb. The doctors can’t understand how I can walk . I also had a cystic twin on my spine that had to be removed .
As I age, I find my ability to get around getting harder. I do not suffer from Hydrocephalus, so I am lucky in that respect. But the doctors always check me for hydrocephalus. They say at anytime I could start to suffer from it. I now also have so much scar tissue that can’t fix my tethered spinal cord. So in time I will go paralyzed again. I am trying to enjoy my ability to get around as much as possible. I will say this, I am so thankful for the time I have had and will have in the future being able to walk .