Nancy
After years and years of searching I have the real answer. I was just diagnosed by a well-known neurosurgeon in L.A. as having a tethered spinal cord. A new phys. med. doc. found spina bifida occulta on my old CAT scan. It was never reported on 2 lumbar MRIs and the CAT scan. He said it was not important, but I researched the web and found out about tethered cord. He admitted he had not ever heard of this disorder. Amazingly, the SBO is very common - 10 to 20% or as high as 25%. The 'take' on SBO that it is an incidental finding - not important. But - if you read the research and do a search on SBO you will find all kinds of problems associated with it. especially the tethered cord. Scoliosis is a RED FLAG. The TC research says it ( scoliosis)results when the bony spinal column is growing, and a too tight spinal cord can not ascend the spinal canal as fast as it should. So, the column bends and twists to compensate. Bladder and bowel problems and pain are the classic complaints - but also, feet abnormalities ( club feet, pes cavus), anorectal dysfunction, all kinds of musculoskeletal things. Please read, read, read. This diagnosis was missed on 3 MRIs for me - the radiologists are NOT thinking of this diagnosis and checking for it. Plus, there are 3 things that must be done: lumbar MRI - measure the end of the spinal cord ( conus medullaris), urodynamic studies, and somatosensory evoked potentials. A neurosurgeon that knows about ADULT tethered cord must make the diagnosis. There are some at the Univ. of Wisconsin Hospital. Interestingly, SBO is considered to be a mild form of spina bifida, and vitually all kids born with spina bifida have Arnold Chiari Malformation - often the very serious kind. So, now we are making the connections at last. You can imagine how a too-tight spinal cord is always pulling on the brain stem area - and the entire nervous system ( and body) can be affected, depending how strong the tethering is and individual structure. Please email me for more info - nallen19@earthlink.net. There is a surgery, but I don't know enough yet. Does detethering the cord release the brainstem area ?Is it better to have the Chiari surgery ? Is surgery too risky ?? But, at least , if enough of us get diagnosed, it will change the entire attitude about fibromyalgia !! This is real, this is serious, we need research. Also, literature reports that it is not uncommon for TC symptoms to start in the adult years - it depends on how much the cord is tethered and how much stretching and micotrauma that the cord is subjected to over time. Childbirth, bending and lifting, whiplash, falling on the butt, car accidents can all start symptoms. Blessings to all. This is a whole NEW world. Please send feedback. Nancy