June 5, 2011
It took me an addition 11 years to get the diagnosis of Tethered Cord Syndrome or TCS. Back in 2000 when I had the brain surgery, the words TSC where never uttered. I will not go into the very long and frustrating journey I had to travel in order to finally get diagnosed. But let's say, it was pretty much the same road I took before they found out I had a Chiari Malformation. Back in March of this year I ended up in Long Island NY at the Chiari Institute. Yup, that's right, all the way to NY to get the diagnosis. Now what exactly is a tethered spinal cord? I'll give you the medical definition because it explains it best.
This disorder is caused when a thickened filum terminale(an elastic -like structure) limits the movement of, or "tethers" the spinal cord within the spinal column. The filum terminale or “terminal thread” is a normal structure that stabilizes the spinal cord within the spinal canal but has no real neurological function. Over time the tethered spinal cord is repeatedly stretched whenever the patient bends at the waist or flexes their neck. The repeated stretching of the spinal cord eventually causes symptoms such as bowel & bladder incontinence, leg & back pain and numbness, balance disturbance and weakness of the legs.
The tethering may affect the function of the entire spinal cord even though the structural problem lies at its lowest point. As a result, those affected by tethered cord syndrome may complain of headache, nausea and even arm pain.Tethered spinal cord is frequently diagnosed in children, usually in conjunction with spina bifida. An adult tethered cord syndrome has also been described. This is not associated with spina bifida but may occur in patients with the Chiari 1 malformation. Some doctors believe that spinal cord tethering may be one of the causes of Chiari 1 malformation.