Linda R.'s Story
my son daughter has club feetI have a 12-year old daughter with spina bifida occulta tethered cord syndrome resulting in a severe left clubbed foot. She has had 3 spinal cord releases; the last release resulted in two nerves severed - one controlling bladder and bowel control (now weakened) and loss of feeling in back of left calf and two small toes on left foot. She has had two failed surgeries to correct left club foot (that resulted from severed nerve from last cord release). She experiences frequent nerve burns in left foot and leg and is developing chronic, but still mild, limp. I am very worried about long term pain and degradation of her left foot function/increased nerve damage. She has a screw in her big toe to keep it straight (the rest of the toes are severely curled). Her foot is very stiff and it's impossible to straighten to a neutral position. She's been to physical therapy (but we live in the U.S. and insurance only covers 20 visits/year) and she is too young to keep motivated with consistent stretching exercises. I fear foot amputation may be her best long term treatment, especially to alleviate the pain, and I want to find out what others with such conditions who are adults are now experiencing.
Added on 28 Mar 2009