Guest guest Posted December 31, 2008 Report Share Posted December 31, 2008 Let me take a moment to explain my daughter's situation before I post a question. My daughter, , is 17 years old. She was diagnosed with Chiari Malformation 4 years ago after chronic headaches. At that time she was referred to Dr. Weigard at s Hopkins. Dr. Weingard said surgery was an option, but decided she could live with the symptoms. Since that time developed chronic bladder and back pain. She has been under the care of a urologist for over 18 months now. The urologist recently diagnosed her with pelvic floor spasms and neurogenic bladder. He is recommending sacral root testing and a possible implant. Part of her evaluation was an MRI of the brain to rule out MS. Her chiari, which is very prevalent, was brought up again. We then followed up with the neurosurgeon who strongly recommended decompression surgery. Pursuing a second opinion we took to the Chiari Institute on Long Island. After a moring of testing, they told she has occult tethered cord syndrome and recommended surgery to free her spinal cord. They feel this will correct her bladder/pelvic problems as well as provide some relief from her headaches. So in less than a year we have had 3 different surgical procedures recommended. My question is whether anyone has had occult tethered cord diagnosed; apparently it is a very controversial diagnosis? And has anyone with chiari and bladder problems had this surgery with relief from symptoms? Thank you JoAnn Quote Link to comment Share on other sites More sharing options...
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