New Phase of Our Journey :: Selective Dorsal Rhizotomy (SDR)

A little over a year ago, we started looking into a way to manage Bryce's spasticity. The spasticity in Bryce's legs have become increasingly unmanageable. We were taking him for Botox injections every three months and each time this was becoming less and less effective. Over time we were also noticing that his legs were becoming deformed. When his legs were straight his knees were slowly beginning to be knee cap to knee cap. Eventually they would even cross one another. Bryce was also having a more difficult time in his Gait Trainer. It also seemed that Bryce's physical therapy was beginning to somewhat plateau. It was time to look into another permanent solution for the management of his spasticity. We spoke to Bryce's CP Doctor at Children's and he said that we had basically two options.

The first option was a baclofen pump, much like a diabetic pump that would be implanted so that this muscle relaxer would be injected directly into his spine. I never wanted to even explore this option. Bryce has two shunts and I wasn't willing to add to the hardware that he has in his body. Another issue with the pump was that Bryce would need to grow quite a bit since there would need to be enough space between his rib cage and pelvic bone in order to place the pump. We needed something that we would be able to do for him sooner. Our fear was the permanent deformities would start to set in.

The second option was a procedure called Selective Dorsal Rhizotomy (SDR). This surgical option would be a permanent solution to the spasticity and would not require additional "hardware." We began doing our research and found great information provided by the St. Louis Children't Hospital. The surgery involves sectioning (cutting) of some of the sensory nerve fibers that come from the muscles and enter the spinal cord. Additional information can be found via the provided link: http://www.stlouischildrens.org/our-services/center-cerebral-palsy-spasticity/about-selective-dorsal-rhizotomy-sdr. We also found that Dr. Park has performed this procedure since the early 1980's and has transformed the surgical technique which allows for a faster recovery and better results. He has performed this surgery on over 2,500 (and growing) patients with cerebral palsy. After a lot of discussion, Matt and I decided that this would be Bryce's best option. The results have been nothing short of amazing. Some children that had never been able to sit independently, crawl or walk were starting to do all of these things after having this operation. This isn't the miracle surgery that is performed and the child wakes up able to do all these things. However, this surgery along with months of intense physical therapy can lead to these results.

Our next step was to gather necessary medical information, x-rays and a video of Bryce doing particular tasks and in particular positions. Once we had gathered this information we submitted our package of information to Dr. Park and his team. After waiting just a week, we received a phone call from the lead physical therapist on February 15th. She told us that after reviewing Bryce's information with Dr. Park and his team, they have determined that Bryce's would be an excellent candidate for this surgery. Best of all - Dr. Park WANTED to perform the surgery on Bryce. It was one of the best phone calls I have ever received.

This would begin the Insurance Battle- countless appeals, letter writing and nagging phone calls.