Since we know a number of doctors, R’s x ray and ultrasound images were sent all over to friends and family in Toronto and internationally. Despite being specialists in radiology and orthopedic surgery, amongst others, most of our family and friends knew nothing about tethered cord syndrome.
When I looked online at tethered spinal cord syndrome all I found were articles by researchers, children’s hospitals and doctors. Most sites were American and suggested that tethered spinal cord syndrome was a form of spina bifida. According to these sites, having a tethered cord could cause incontinence, inability to walk and/or severe back pain.
What do we do?
I am not a health professional but from reading the online material I found that there are basically two options if a child has tethered spinal cord syndrome. You can take a “wait and see” approach and hope for the best or the child can have spinal surgery, where the surgeon will untether the spinal cord from the attached tissue.
In Canada, the most common approach is to “wait and see” how the child progresses while watching for developmental milestones and any unusual physical changes as the child grows. This was the route our neurosurgeon chose. He suggested that we watch R for any symptoms and come back on a yearly basis for check ups, tests and further ultrasounds and x-rays.
Some of our family members didn’t agree with this approach. They felt that we should seek a second opinion and prepare for the possibility of spinal surgery. This entire process was so overwhelming and upsetting. We just wanted to enjoy our wonderful child and not worry about if he would progress normally. Ultimately we did not seek a second opinion. We trusted in that the doctors and staff at Sick Kids knew what was best for our son.
One of the reasons I wanted to write this post is for the mothers and fathers of children who are diagnosed with tethered spinal cord syndrome. It is a very scary diagnosis to receive and there seems to be little information online about children with the disorder.
How is R Now?
R’s diagnosis was delivered four years ago. Since then, R has been walking (and running), playing soccer, skating, swimming, climbing, jumping and doing everything else a 5 year old does. R had no trouble with potty training and he has very few accidents. We are grateful that he has not had any pain in his back, his feet are normal and he continues to grow properly. R goes to the neurosurgeon and urologist every year for ultrasounds and check ups. All of the doctors are very pleased with his progress so far.
Not every child is as blessed as R. However, it is important for people facing this diagnosis to know that things can be ok. As R keeps growing we can only hope that he continues to be the healthy, happy and active troublemaker that we love.
If you have been touched by tethered spinal cord syndrome please reach out. I’d love to hear your story.