DAILY LIVING & MOBILITY

I am Spina Beautiful!

Spina Bifida (SB)

Melanie Hernandez

🎗✨ I'm Melanie. I'm a 21 year old Social Work student living in South Florida while working full time for a local hospice as well. As you may or may not know, I have Spina Bifida Occulta, more specifically lipomyelomeningocele (my specific case is in the 5% in the world in terms of complexity for lipomyelomeningocele)- the definition on Seattle Children's Hospital website is: 'A lipomyelomeningocele is a rare birth defect. A lipomyelomeningocele is a fatty mass covered in skin that is attached to the spinal cord." This has caused several underlying conditions such as the following: -a tethered spinal cord, where my cord is stuck on a section of my spine. The proliferation of scar tissue after each surgery increases the chances of nerve damage/paralysis each time. -numbness of my legs. -a neurogenic bladder, which basically means my bladder is paralyzed with the need to catheterize seven times a day. -sacroiliitis, a subsidiary of rheumatoid arthritis, where the cells in the sacral joints of my hip are attacking themselves, causing prolonged damage and chronic pain. I had surgery in July of 2015 to drain a cyst and separate my spinal cord from my spinal column. After this operation, I had a CSF leak that caused SEVERE headaches, loss of mobility, and nausea. I've been diagnosed with CRPS, a painful condition caused by severe nerve damage that occurred during my last surgery due to negligence and lack of monitoring. Basically, my nerves are permanently stuck in a state of hyperactive overdrive and react by sending my body painful signals to even the most regular activities, my body no longer can tell the difference between danger and normal life. The brush of sheets on my legs and the lightest of touches is extremely painful and uncomfortable to me. If left unmonitored, CRPS has the ability to damage the other nerves around it. My neurosurgeon and I are experimenting with certain nerve pain medications. On December 1st, I will be having surgery number 16, which will use a piece of tissue from my thigh to support my bladder and (hopefully) correct a lot of issues that I've been having lately. If I can offer one bit of advice to anyone, it's that although you can't change what happens to you, you CAN a change how it alters your outlook on life!

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