Tethered Cord Syndrome – What to do Now ?
What is Tethered Cord Syndrome?
Tethered Cord Syndrome – What to do Now ? #TetheredCordSyndrome–WhattodoNow ?
The quick answer to this question is that the spinal column and spinal cord become attached in at least one place. It's a cousin to Spina Bifeda (in simple terms, it's "sort of like it" or "related to it"), although people with Tethered Cord Syndrome typically don't have the open lesions (gaping wounds) in their back like those with Spina Bifeda.
It can develop in fetuses or as a result of a back injury where the scar tissue blocks the flow of fluid around the spinal cord.
Symptoms Of A Tethered Cord
Symptoms of a tethered cord can include lesions, dimples, hairy patches, or fatty tumors on the lower back; foot and spinal deformities; weakness in the legs; lower back pain; scoliosis; and incontinence. Left untreated, it can lead to additional loss of movement, feeling or the onset of pain or autonomic symptoms.
Born With A Tethered Spinal Cord - A little personal history
I was misdiagnosed (my parents were told I had Cerebral Palsy) until I was five years old. But, although my parents wanted to trust what they were being told by the doctors, something just didn't seem 'right'. Finally, after years of frustration, though, I was finally diagnosed with a tethered spinal cord. The technology just wasn't there at the time to catch it sooner. According to the doctor, there were only seven other documented cases at the time.
I have Hydrocephalus as well (the fluid in my brain doesn't circulate on its own, so I have a "shunt" tube that does it for me). As a child, I also had kidney infections, my feet were twisted and my ankles rolled...I guess it could easily be said that I was one big medical drama after another.
I had a Tethered Cord release surgery when I was five, then again when I was fourteen. I've had over twenty shunt revisions for the Hydrocephalus (sorry, I've lost count at this point), and a host of other corrective surgeries on my legs and feet.
I guess that might sound like a lot to someone who's never stepped foot inside a hospital, but I'm not looking for any sympathy. At the same time, though, I don't want to sugar-coat this condition and make it sound like things are always rosy. My hope with this page is to educate parents and others who may have to deal with Tethered Cord Syndrome either for themselves or for their child. I truly believe that the more educated we are, the less we have to fear.
Tethered Cord Syndrome - How it affects me
I'll be perfectly honest. It's not always easy. I have good days and bad days. On the bad days, I long for the good day, and on the good days, I'm grateful it's not a bad day. There are many days I'm able to smile - and a few days that I rely on the smiles of others to get me through.
Living with Tethered Cord Syndrome can be pretty tricky sometimes. There are days that I have very horrible pain in my back or feet. Because of the awkward angles in my back from Scoliosis, my balance is thrown off and it affects my legs and feet.
Because there's so much added stress to my muscles and bones, I've developed arthritis in my back and feet. Although I've been blessed with decent kidneys/bladder, I've had my share of infections, and know that I can develop greater problems with them down the road, and it's honestly one of my biggest fears.
There are days I don't want to get out of bed. There are days that I simply don't. Even though I can walk a little bit unassisted around the house, I have forearm crutches or a best wheelchair that I use on my 'bad days' or when I go into town. When I have a shunt failure (there is no warning at all for these) I have to drop everything and have surgery to take care of it.
I have exercises that I do regularly that help. Feel free to check out my exercise program: (Because I Can Do It). I also spend quite a bit of time riding my bike to get exercise and fresh air during the warmer months. My hope is to help someone in, or close, to my position to be a little more mobile. It's truly my goal through all of this that I can help someone else get through it just a little bit easier - without going through some of the frustrations and pain that I've been through. If I can do that, then every ounce of pain I've had to endure will be worth it.
The Blessings Of Tethered Cord Syndrome
It may sound strange to say it, but I've truly been blessed by Tethered Cord Syndrome. I've been IMMENSELY blessed with an incredible family and amazing friends. Without them, it would truly make the 'bad days' unbearable. But with their support, I'm able to find the strength I need to grit my teeth and get through it.
I've also been blessed by the 'bullies' - those people who were mean, whether through ill will, or a simple matter of being uneducated about my condition. Though their words and actions were hurtful at the time, it made me a stronger person today. I have learned to ignore them. I learned to stick up for myself if and when I needed to. I learned that they were just people like me fighting their own battles.
It also brought me closer to my God. I'm not asking you to believe as I do. But, I truly believe that, without a Higher Power to call on, I would have given up a long time ago. My God strengthens me in my weakness, is there for me to lean on for extra support, and my silent Partner in my success. He has taught me what it truly means to live with purpose and is ultimately my reason to keep on smiling!
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