Spina Bifida Occulta - After surgery of tethered cord
I have a 3.5 year old son that underwent surgery to untether his cord for a lipomyelomeningocele. He was an unsual case where this lipoma grew at an incredible rate from birth to 5 months. It flattened his spinal cord which impacted his bladder and left leg. His bladder was not emptying and his left leg was losing mobility. Fortunately the surgery corrected both problems and he has been doing great so far. However, we were told that there is a 60% chance his cord will re-tether again. My son for the past 4 months has been complaining about knee pain. Its something that settles down with motrin. Its pretty bad when it happens and the neurosugeon hasnt seen this before. X-rays show nothing so it is likely an issue with spinal cord nerves.
Has anyone else experienced this or other related pain with their children dealing with this condition? He has gone through a growth spurt during this period and I am wondering if that has something to do with it. Is it temporary or is it an early sign of trouble? Any thoughts or experiences are welcome!!
All the best