Adult Tethered Cord Syndrome

  I am a 30 year old female recently diagnosed with TCS.As a child, I was diagnosed with Scoliosis - 18 degree curve and one leg longer than the other. It was not enough for surgery at that time. I have had lower back pain and numbness on and off for many years. But have found that the older I get, the worse it gets. Before CHristmas, my husband suggested I see someone about my pain. It hurt him to see me crawl out of bed every morning in tears. Xrays were done and the Tethered Cord was discovered. This was followed by 2 MRI's and a split cord was found but with no bone fragments.I had also noticed that I was having some urinary problems such as frequency, incontinence and I never have a steady stream. I had a Uro-Dynamic test done recently and it showed that there was some disenergy between my bladder and sphincter. I have been seeing a pediatric neurosurgeon at MCV in Richmond VA who suggested not to have the surgery for the cord, even though it was recommended by the Urologist. He currently had 2 adult patients who had the same surgery but are now catheterized for the rest of their life. I was told I am in a Catch 22, because if I do not have the surgery, I may lose the functionality anyway.  Also, about 2 years ago, I had bowel problems and MCV diagnosed it as a Diverticulitis. They thought they spotted an Abscess in my large intestine, but they could not be sure.  I wonder if it was related?  I seem to be standing at a cross road and either way I go, I look to be doomed. I am very angry and will be seeking a second opinion. I do have a patch of hair on my lower back and it has been there forever. I have read this in several places through these studies, but am really not sure what it means. I also have what seem to be small cysts located next to this area by the right node of my pelvic bone. The right hip and leg are what give me the most problems. If you could provide me with any information, I would be very appreciative.
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Dear Lori,
Tethered cord syndrome is characterized by an abnormally low conus medullaris (the end of the spinal cord) associated with a short, thickened filum terminale.  Many patients have a lipoma associated with the filum terminale.  The presenting symptoms include gait difficulty, leg weakness, muscle atrophy, back and leg pain, bladder dysfunction, spina bifida and scoliosis.  Many patients have cutaneous findings of a hairy tuft in the back or discoloration of the overlying skin.  The syndrome may present in adults or in childhood.
When a tethered cord is diagnosed on MRI, surgery may be considered.  This
would involve a laminectomy in the lower spine followed by sectioning of the filum terminale and any associated lipomas.  Adults usually find good relief from the pain, but urinary difficulties often persist due to the long-standing stretch on the nerves that control bladder function.
Your history suggests that you are having problems from the tethered cord, and a second opinion to a neurosurgeon is in order.  It is in your best interest.  Should you choose to be seen at the Cleveland Clinic, an appointment can be made by calling 800-223-2273, ask the operator for the neurosurgery appointment desk.
Good luck.