Selective Dorsal Rhizotomy: What Families Have To Say

Selective dorsal rhizotomy has become increasing popular in the last year or two. In this blog post, we’ll share what families have to say about it.

Selective dorsal rhizotomy (SDR) is a surgical procedure to help individuals with Cerebral Palsy walk. SDR is aimed to reduce levels of spasticity in the legs and is followed by an intensive period of physiotherapy.

The surgery, according to St. Louis Children’s Hospital, has undergone more thorough scientific scrutiny than any other. The Hospital says parents and patients should inquire about SDR before undergoing orthopedic surgery.

In the last year or two we have been seeing an influx on news of children with Cerebral Palsy who will undergo SDR. At the end of September, the family of 11-year-old Sophie Sharman raised £18,000 for SDR, which is scheduled this Saturday at Queens Medical Centre in the U.K. Over the summer, 7-year-old Quinn Callender sold lemonade and raised over $50,000 so his best friend Brayden can fly to the U.S. for SDR. 

How does SDR work?

SDR, explained by St. Louis Children’s Hospital, involves the surgical team identifying the rootlets that cause spasticity. “The abnormal rootlets are selectively cut, leaving the normal rootlets intact. This reduces messages from the muscle, resulting in a better balance of activities of nerve cells in the spinal cord, and thus reduces spasticity.”

Learn more about how it works on St. Louis Children’s Hospital’s website.

What do families say?

Four years ago, Holly Davies flew to the U.S. from the U.K. to receive SDR surgery. Holly’s mother, Jo, said, “Within days of the surgery she was walking unaided for the first time in her life. By 2012 Holly was no longer on disability benefit and no longer classed as disabled.”

In an article on the Huffington PostNicole Luongo shared her experience: “At nearly 40 years old, I had SDR with Dr. T.S. Park, a world-renowned neurosurgeon at St. Louis Children’s Hospital, acclaimed for the minimally invasive technique he’s used on more than 2,800 patients worldwide. It’s been over a year since I had SDR. The spasticity in my legs is gone! I walk much smoother and straighter (no more bent knees) with heel-toe motion (instead of striking the floor with my toes first), no longer leaning to one side, and both legs are even, eliminating the need for ugly shoe inserts. I tried rock climbing for the first time, began ballroom dancing again and attended iCan Bike camp — on my 41st birthday — to learn how to ride a bike!”

Here are some comments members of our Facebook community have said:

Michael Hanselman, wrote, “My grandson had sdr surgery at motts childrens hospital about five months ago. Every day he gets stronger.” Timmy Tee said, “My son had it in august 2012 at New York Presbyterian. It made a big difference in his walking.”

Nancy Marmet commented,  “The SDR is an incredible surgery — our son had at age four and was ready to be on his feet within four days of surgery, the difference it made in his tone was great, although his tone is still high he is much more comfortable and books using his lofstran canes.”

Chris Inness said, “Our daughter had it done and it was a huge blessing.”

However, despite the success stories we have seen about this surgery, we want to caution our readers that surgical intervention is not for everyone. A major consideration for surgery is whether the child can participate in the rehabilitation required post-operatively, and whether the family has the means to devote adequate daily attention to the child’s full recovery.

Facebook fan Devon Wieters advised, “It is not for everyone talk to your doctor about what’s best for you! There is no way to reverse the effects of this surgery.”

Questions to ask the doctor

When discussing surgery with the child’s doctors, it is recommended that parents ask questions about goals, expected results, surgery success rates, risks of the procedure, risks of forgoing the procedure, effect on associative conditions, and rehabilitation expectations after surgery. Click here for questions to ask your child’s physician when they recommend a surgical option.