The fancy title of this blog post is the name of a surgical procedure we’re considering for Caleb. Caleb has spastic diplegia cerebral palsy which means that his lower half is constantly in a state of contraction which makes his leg muscles feel tight. Caleb sustained a brain injury, known as periventricular leukomalacia (PVL), sometime before, during or shortly after birth. This injury isn’t progressive so it won’t get worse over time, but that part of the brain is essentially sending the wrong signals to Caleb’s lower half.
This surgery would permanently eliminate Caleb’s spasticity (muscle tightness) issues, which is what is holding him back from being able to stand and walk independently. The truth of the matter is, Caleb’s spasticity is manageable now through stretching and physical therapy, but it’ll never go away and will likely get worse. It’s not uncommon for adults in their 30s and 40s with cerebral palsy to experience premature aging after decades of additional stress and strain this disorder puts on their bodies. There are other more conservative treatment plans like giving oral medication like baclofen (a muscle relaxant) or Botox injections into the affected muscles but neither of these is a permanent solution to his spasticity. As Caleb grows, his bones will grow faster than his muscles, which will likely result in a need for him to have orthopedic surgeries where the surgeon lengthens the hamstring, heel cord, etc. If Caleb were to have the SDR surgery at an early age, it might eliminate the need for these orthopedic surgeries in the future. At least that’s the hope.
Selective Dorsal Rhizotomy (SDR) works like this: At the time of the operation, the neurosurgeon divides each of the spinal nerve roots into 3-5 rootlets and stimulates each rootlet electrically. By examining responses from muscles in the lower extremities, the surgical team identifies the rootlets that cause spasticity. The abnormal rootlets are selectively cut, leaving the normal rootlets intact. This reduces messages to the muscle, resulting in a better balance of activities of nerve cells in the spinal cord, and thus reduces spasticity.
In 2013, SDR was performed at St. Louis Children’s Hospital 237 times and patients came from the US and twenty-seven other countries to have the surgery. This surgery is performed elsewhere in the US and abroad, but the team at St. Louis have performed far more surgeries than any other hospital. There are a plethora of YouTube videos chronicling the success that families have seen after they’ve had SDR. We’ve also met a local family whose daughter underwent the procedure at age 2.5 and has seen great results.
The first step in this journey is to find out if Caleb is a candidate for the surgery. We will be traveling to St. Louis this Sunday in anticipation for his appointment on Monday. We are optimistic that he’ll be a good candidate and are anxious to hear Dr. Park’s prognosis as to what he anticipates Caleb will be able to do in the future if he gets this surgery. This is a major surgery and Shane and I still have lots of questions for Dr. Park before we make our decision. The surgery itself is only a small part of the years that he’ll spend in physical therapy to gain strength and learn how to walk, jump, run, etc. It’s recommended that Caleb undergo 4-5 physical therapy sessions a week post-op for about 6 months. This is a huge undertaking considering we’ll be welcoming a new family member in a few short weeks, but we’re ready for the challenge because Caleb deserves every opportunity to reach his fullest potential and I know he’s destined for amazing things…
So please keep us in your thoughts as we start this journey!