Looking to find out as much as I can. I’ve a son, 2 1/2 Years old. Recently been diagnosed with Syringomyelia and Conus lying at L2 sustained by suspected Tethered Cord Syndrome. Originally. At 9 months old and a Ingual Hernia at 10 weeks old…there had been concerns due to his crawling. Then noticed an asymmetrical crease in his right thigh. Hip dysplasia was ruled out. Late walker with tip toeing in full swing. Physio are involved with peidro hospital boots. After other medical issues his Consultant Urologist asked about the boots and under examination found a sacral dimple. We were internally referred in July 2014 then an MRI In September 2014. Now waiting on another visit to the urologist for a bladder function test to see how much damage has all ready been caused given he shows know signs of urination. Can any one tell me more about this Condition? Their experience with TCS sustaining Syringomyelia?? How concerned I should be?? I know little to date bar a brief letter Any one seen this in a toddler?? Does any one have an idea about next steps?? Thank you x

angelaflynn1983, I am so sorry for what you are going through. I have a small syringohydromyelia extending from T8 to T12 measuring up to 3 mm in cross-section at the T9 level. Neither of my sons inherited syringomyelia. So, the only experience I have is what I have experienced in my life. I will be happy to answer questions about the things I know about first hand.