Why do we have to fundraise for Kate’s SDR?
No other treatment options for spastic diplegia CP offer a long term solution. SDR is the only treatment which offers a permanent solution to a permanent problem.
SDR is not currently available in Ireland. Since Kate is an adult, very few surgeons would perform the operation on her. The technique has been pioneered by Dr. T.S. Park at St. Louis Children’s Hospital, MO, USA. Dr. Park is the most experienced surgeon performing SDR, having operated on more than 3,500 children and 130 adults since 1987. The number is considerably lower for adults because the majority of adults with Spastic Diplegia CP do not walk independently by the time they reach adulthood due to the toll spasticity has taken on their legs as they have aged. Independent walking is a fundamental requirement to be considered as a suitable candidate for SDR surgery as an adult. This is why we want the surgery performed on Kate now rather than later. Once she loses her ability to walk independently, she will no longer be considered a suitable candidate.
What does SDR involve?
SDR is a spinal surgery. An incision is made into the lower back. The L1 vertebrae is opened to access the spinal cord. The motor nerves are separated from the sensory nerves. Each sensory nerve is then separated into 4 to 5 rootlets. Each of these rootlets are then tested using electric stimulation and the response of the muscles are measured. The nerves rootlets which get the most abnormal responses and up to 70% of the rootlets are cut selectively. By cutting these nerves selectively, the spasticity is permanently reduced or eliminated and the muscle can finally stop contracting abnormally all the time.
What happens Post SDR?
Kate will spend 5 days in hospital after the surgery. For the first three days, Kate will be lying flat on her back and have an epidural catheter in place to deliver pain killers and antibiotics directly to the surgical site. On the third day, the epidural will be removed and Kate will slowly start physical therapy to learn to walk again without spasticity. Five days after SDR, she will be released from the hospital. However, Kate and her family will have to remain in St. Louis for a further three weeks to continue to undergo daily intensive physiotherapy with the hospital staff. This is to ensure she recovers well and to allow her to regain some strength and mobility after the surgery. Her recovery and rehabilitation will have to continue for up to two years of intense physiotherapy and physical exercise after her return to Ireland.