Just Rolling With Life: Let’s Talk Spina Bifida

Ok guys, let’s talk Spina Bifida. As I touched on in the first post, there are two different types of Spina Bifida. First, there’s Spina Bifida Occulta – the more mild type – where people sometimes don’t even know they have it.

According to The Spina Bifida Association, “Spina Bifida Occulta is the mildest type of spina bifida. It is sometimes called “hidden” spina bifida. With it, there is a small gap in the spine, but no opening or sac on the back. The spinal cord and the nerves usually are normal. Many times, Spina Bifida Occulta is not discovered until late childhood or adulthood. This type of spina bifida usually does not cause any disabilities.”

They go on to say: “There are forms of Spina Bifida Occulta that do cause problems. They are:

• Lipomyelomeningocele and lipomeningocele—this is like a tethered spinal cord, except it is attached to a benign fatty tumor
• Thickened terminale—the end of the spinal cord is too thick
• Fatty terminale—there is a fatty lump at the inside end of the spinal cord
• Diastematomyelia (split spinal cord) and diplomyelia—the spinal cord is split in two, usually by a piece of bone or cartilage
• Dermal sinus tract (with involvement of the spinal cord) the spinal canal and the skin of the back are connected by what looks like a band of tissue.”

You can find more about that HERE.

Digging a little deeper, there’s Myelomeningocele (oh, hey! That’s me!) technically the most severe form of Spina Bifida. This is a condition where the meninges protrude from the spinal defect. The spinal cord remains in place.

Other congenital disorders or birth defects may also be present in a child with myelomeningocele (issues like bladder control, bowel control, feeling below the waist for example). Eight out of ten children with this condition have hydrocephalus – which requires a shunt to control fluid.

Other disorders of the spinal cord or musculoskeletal system may be seen, including:

• Syringomyelia (a fluid-filled cyst within the spinal cord). I don’t think I’ve had to deal with this.
• Also, people have to deal with hip dislocation.  

Due to limited feeling, blood circulation is something of which to be mindful. With Myelomeningocele, people are at risk of pressure sores/ulcers, sores and a few other skin issues. Not only that, but we have to be mindful of our shunt and headaches. One symptom of the shunt malfunctioning – the main one, anyway, is a headache that doesn’t go away. In some people, there could even be swelling. Oh yeah, and if we had any surgeries at a young age for our bowels and stomach, that situation should also be monitored. Over time, each of those things could present challenges later. They might also need surgery.

In my journey, I have had six surgeries for the things mentioned above. Stomach, the spot on my back, shunt and a few other things that probably shouldn’t be discussed at great lengths on here. My most recent surgery was to close up a spot. It forced me to do homebound schooling for half of my junior year of high school. It forced me to look a little deeper at how I managed self care as well. It’s been 20 years, but it still sits in the back of my mind. For mothers and even youngsters that could be reading this, keep a close eye on skin and the body in general.

This post was a little long, maybe even a bit vague in some areas. Nevertheless, I just wanted to quickly explain the differences between all the types of Spina Bifida. Oh, and by the way, there are celebrities and the like that have Spina Bifida that the untrained eye wouldn’t even realize. Interesting, huh?

That’s it for now. I’ve inserted sources of my info on this post. Feel free to read them. Feel free to leave questions in the comments below.

Until next time, I’ll leave you with this: Psalm 27:3

“Though an army besiege me, my heart will not fear; though war break out against me, even then I will be confident.“

If any challenge stands before me, it will fall before me.